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Old 04-11-2010, 05:38 AM   #16
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Re: Hospice wants me to stop feeding my dad

Princess

You have a very wrong idea of what the hospice folks are about. They are simply there to help you make you dad's passing one of dignity and peace. The morphine will be given ONLY if needed. (My wife had no drugs of any sort)

Your dad is, for the most part, already gone. His body is just taking the natural course. All of the bad stuff (bed sores, aspiration, etc.) is going to happen where ever he is. You cannot change that. Hospice is there to take care of all of the unpleasant stuff for you - they don't cause it.

Once you accept what you (or anyone else) can't change, you can find peace with it. It was heartbreaking to see my once-lively and sweet wife laying in the bed - unable to eat, or think, or respond. But the moment that she passed was one of the sweetest, most precious moments we ever shared. Because I allowed her to go on her terms. I certainly don't feel like I "took an old horse out and shot it" – I simply gave her the dignity she so deserved.

I'm sorry that you are having such a hard time accepting what is going to happen. And yes, you can handle whatever God puts on you. And you can choose to let it tear you apart or make you stronger. What would your dad want for you?

My best wishes for today. K

Last edited by kenbob71; 04-11-2010 at 05:39 AM.

 
Old 04-12-2010, 08:33 AM   #17
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Re: Hospice wants me to stop feeding my dad

I am still reading everyones words and yes I understand your losses and so very very sorry. I feel your love in all the words, it the same as mind. Dads still waking when I walk in the room, I tell him today to help me make a good choice. I ask him if he wants me to take him back to the doctors for feeding tube replacement. He just stares no answer he used to shake his head yes or no. My dad is already gone to me, this shell is all I have yes its selfish maybe. I just wanna keep holding his hands and feeling the warmth coming from them and kissing his forehead.

I didn't tell most of you this but I have no children due to early cancer detection. Now dad feels like he's dad and my child. Seems mother nature pulled a fast one on me. I got to feel like a mom in a strange way. Now my child is leaving me. WoW!

This morning I got up and try feeding him he only ate small bites the thickend juice he took all. But I say to myself, I am getting weary dad is weary we both are fighting. I see dad is tired yet for some reason I don't feel he is ready to go. I am afraid to tell him its ok to die, don't know why. But anyway I stood in front of fridge with phone in hand and attempted to call hospice back. Each time I dropped the call finally I got enough effort to call them and the lady at serenity, I tell her whats happened since they left and why I didn't feel comfortable at first, she tells me she will have to talk to her supervisor about coming back out because they had already been out to my home twice, I just got frustrated politely said thank but never mind and hung up.

I however, have called another hospice care, and asked them if they will come out. Yet I keep having all these doubts about what else I could do to help dad. Like for instance dads a veteran and I havent taken him to VA yet. just hospitals. This is insane, now I am beating myself up because I didnt take him there.

I just would like to know did any of you use the feeding tube and whats your opionions on them. How much can it help or hurt?

 
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Old 04-12-2010, 08:36 AM   #18
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Re: Hospice wants me to stop feeding my dad

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Originally Posted by kenbob71 View Post
Princess

You have a very wrong idea of what the hospice folks are about. They are simply there to help you make you dad's passing one of dignity and peace. The morphine will be given ONLY if needed. (My wife had no drugs of any sort)

Your dad is, for the most part, already gone. His body is just taking the natural course. All of the bad stuff (bed sores, aspiration, etc.) is going to happen where ever he is. You cannot change that. Hospice is there to take care of all of the unpleasant stuff for you - they don't cause it.

Once you accept what you (or anyone else) can't change, you can find peace with it. It was heartbreaking to see my once-lively and sweet wife laying in the bed - unable to eat, or think, or respond. But the moment that she passed was one of the sweetest, most precious moments we ever shared. Because I allowed her to go on her terms. I certainly don't feel like I "took an old horse out and shot it" – I simply gave her the dignity she so deserved.

I'm sorry that you are having such a hard time accepting what is going to happen. And yes, you can handle whatever God puts on you. And you can choose to let it tear you apart or make you stronger. What would your dad want for you?

My best wishes for today. K
Please I am sorry I should have thought before I wrote that, and considered everyone else's losses. Please forgive me? That's just a thought I fought with. I am pretty much over it. And yes I think I am begining to come around to it. I wish I could retract that so others will not read it. I will try. ss Princess

 
Old 04-12-2010, 09:08 AM   #19
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Re: Hospice wants me to stop feeding my dad

DO NOT feel bad about posting your feelings. That's what this is for.

This is a very hard thing to go thru. And no one of us judges another's decisions and opinions. We've all had to wrestle with the feelings you are going through. We are just expressing what worked out best for us when it was all said and done. And just want you to arrive at a decision that you can be at peace with.

No one answer is right for everyone. And we all respect that difference.

Keep posting, and remember... St. Ken says no guilt!

 
Old 04-12-2010, 01:17 PM   #20
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Re: Hospice wants me to stop feeding my dad

Princess---listen to St Ken! He is right on the money with the guilt thing. Guilt is a totally useless feeling so you must fight it. You can't say the wrong thing here. A more forgiving, understanding bunch you will find nowhere. If you keep your doubts and fears in, you are only hurting yourself which helps no one. You don't have to tell your dad it is ok to die. You can find your own words to tell him you are strong and what a good job he did and thanks to him you can stand on your own two feet. Even if you don't feel that way, this is one time I'll bet your dad will like hearing it. And maybe be comforted by it. If you read around some of the threads, you will find out others' experiences with feeding tubes. From what I understand there comes a time when just putting food into the body becomes counterproductive because the body can no longer process it properly. In which case force feeding isn't good. Princess, you are coming to terms a bit---go back and read your earlier posts and see if you aren't sounding better. As for the having no children, it is easy to see how your dad has fit the role as he has gone downhill and needed so much care. I have no kids and don't regret it a bit. If loving and caretaking are what you are good at, there are many many many outlets to help with kids and the elderly both. Maybe you could go to work with one of the home care places that send people in to help. My parents have homecare now and those ladies are life savers for us all. Sad truth is, there is a great need for loving helpful hearts in this world and not enough to go around. Don't give up on hospice; someone will step in. And by accepting, you are not giving up on your dad. You are merely accepting. There is nothing the VA could do that isn't being done---my sister-in-law ended up bringing her husband home from the VA to die at home with hospice standing by to help with the pain management. Quit second-guessing yourself. Do you have anyone close by to come see you? A pastor maybe? Does your dad have a social worker? Could you ask for one? There is no shame in asking for help or for taking it. Your dad would not want you to suffer or hurt. He would want you to be good to yourself. Come here and vent. Love & Light! Lynne/Blue
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Last edited by bluemoonlady; 04-12-2010 at 01:18 PM. Reason: typo

 
Old 04-12-2010, 03:10 PM   #21
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Re: Hospice wants me to stop feeding my dad

i feel for you so much. do what you think is right, but remember never to judge others. each situation is different. i wish i could put my arms around you now. i hope you feel the support here.

 
Old 04-12-2010, 04:35 PM   #22
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Re: Hospice wants me to stop feeding my dad

Don't ever hold back on your thoughts and ideas and opinions! That is why we are here. If we disagree, we will tell you. We will tell you how we dealt with it. No need ever to feel guilty, this disease is bad enough to handle without guilt feelings on top of it. I wish you all the best, and you are in my thoughts and prayers,

love
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Old 04-12-2010, 05:26 PM   #23
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Re: Hospice wants me to stop feeding my dad

That was St. Martha. The Saint of all of us lesser Saints!

 
Old 04-12-2010, 08:03 PM   #24
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Re: Hospice wants me to stop feeding my dad

Your feeding tube question. There was a lot of discussion re that recently and the concensus was no as it is apparently not pleasant and does little to assist a natural process. For all of us our parent became our child and we did what we felt was right at the time. I think that most of us would agree that our parents would hate was has happened to them and what it does to their families but please do not hold on for your sake. Let him go with love and dignity.
There are a lot of us who weren't saints...I hated, resented, was furious that my lovely mum had ALZ but was thankful that she was happy in her own world, had loving care and we had fun. When she was unable to come out with me and was unable to help herself I would have done nothing to slow a natural process. I look back with no regrets...was she loved, cared for and did we do everything that we could for her? The answer is yes and that is important for healing.

Last edited by cejayb; 04-12-2010 at 08:12 PM.

 
Old 04-12-2010, 09:52 PM   #25
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Re: Hospice wants me to stop feeding my dad

Don't retract anything that you wrote princess and know that our answers to you are from our hearts and from our experiences. There are no wrong feelings and emotions. I can hear the pain and struggle in your typing. I don't think it's your Dad that is not ready to go... .I think it is you that is not ready to let go. You are rethinking and questioning what you have done. This is actually normal but you have to know that you have done all that there is to do for your Dad.

The hardest thing I have ever done in my life was accept that it was Dad's time to die. That I had done all that I could do for him except to allow him to die naturally and with dignity.

I never considered a feeding tube because I had advanced directives from both of my parents that they didn't want the feeding tubes or other life extending interventions. I guess i could have ignored their wishes and done it anyway but that was not what I wanted for them either. It was actually not an option for me.

you stated that you father was tired and you were tired. Yet you want to continue doing this. You know he is close to the end but you don't want to give him permission to go. Yes, I hear the conflict in what you say. Take a good long look at your Dad. Is this truly what you want for him... not for you but for him. That is when I found my peace... when I looked at Dad and not my reflection.

I pray for you to find the courage and strength that you need

Love, deb

 
Old 04-13-2010, 07:24 AM   #26
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Re: Hospice wants me to stop feeding my dad

I for one truly wish Lil Deb would pipe up now on this topic. There was no one here who held on so much as Lil Deb for her Dad. she kept him at home right up to the very, end. She now works for a center as the activities director for their Alz and Dementia occupants.

But Lil Deb would have the been there, did it, thoughts on your feelings as I believe they mirrored hers for the duration. In hindsight though she did say that she regreted clinging to him for as long as she did because she thinks that's what kept him here longer than it would've been but she's the only one that I think may be better service to you and your concerns.

I'll get her to jump on here soon, I promise.

Diane

 
Old 04-14-2010, 11:32 AM   #27
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Re: Hospice wants me to stop feeding my dad

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I for one truly wish Lil Deb would pipe up now on this topic. There was no one here who held on so much as Lil Deb for her Dad. she kept him at home right up to the very, end. She now works for a center as the activities director for their Alz and Dementia occupants.

But Lil Deb would have the been there, did it, thoughts on your feelings as I believe they mirrored hers for the duration. In hindsight though she did say that she regreted clinging to him for as long as she did because she thinks that's what kept him here longer than it would've been but she's the only one that I think may be better service to you and your concerns.

I'll get her to jump on here soon, I promise.

Diane
Hi, all dads has lost 8 pounds since 26 of last month, so I panicked and take him back to another hospital this time the VA. I ask them to put tube back in. But, I will indeed try to listen to the doctors this time. And if they refuse to place it. I will than humble myself to God, and ask him to help me get through this time. I kept telling myself what if I don't take him I will have to live with the thought of maybe he will live longer if I put the tube in. Letting go of someone you so dearly love, wow. Today I woke up feeling so stressed. I took a prescribed sleeping pill last night because they kept dad. he was dehydrated pretty bad due to fact I wasn't getting enough nutrients into him the way I was trying to feed him. I converted to feeding him with a syringe. thicken water and ensure.

I don't know how I am going to get through the moment he takes his last breath. Thats whats scaring me, yesterday while coming from hospital leaving him almost 70 miles from home. I envision myself looking down on him in his casket telling him daddy I did all I could to keep you with me. I just burst into tears. Its only me my other siblings live a few hours away. And seldom call or come to help with dad. When they have came its because I was so distressed I had to call and ask them to please come give me a break. Maybe, If I had a solice time to think I could grow some courage. I have been praying, This morning a minister called and let me talk and I talked for almost an hour. Than he prayed with me.

Well, I will talk to doctors today, final decision. I am also afraid to put the tube back in will read up on the forums here about experiences with feeding tubes. Thanks all God Bless You.

 
Old 04-14-2010, 12:23 PM   #28
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Re: Hospice wants me to stop feeding my dad

I think I speak for the consensus that we weren't high on the feeding tube matter. There are one or two others who feel strongly the other way.

In our case, thankfully when the irrevocable trust and all other documents were created, one of those documents was a Living Will/Medical Directive. It clearly stated a paragraph that said

"I am instructing my children and others to do nothing that will prolong my life or delay my death, if it has incapacitated me and there's no hope for recovery".

This document kicked in the last time Mom fell trying to get out of bed. She was classified as severely dehydrated. While it was difficult for my sister to accept that she wasn't getting food or liquids, my sister ultimately was convinced that she wasn't making this decision, my mother already had. My sister chose to go everyday to see my mother. I chose to go only during two occasions to make sure that my sister's concerns were being met on behalf of my mother.

Neither one of us was with my mother when she finally passed. As far as I was concerned my mother died 4 years earlier when she could no longer have her needs known. It helped me to depersonalize the individual my sister was taking care of because some of those decisions would've been tough for me since everything towards the end no longer was a battle between my sister and my mother but a battle between my sister and I.

I don't know what the priest told my sister the 4 times she went to speak with them but I do think it was an agreement that you can't interfer with the plans of your higher-power (whatever label you use to refer to him), to do so is nothing less than selfish on the part of all of us who want to keep them with us forever since we know reality is -- this will never be the case.

I just wanted to make sure my mother wasn't in pain and suffering. But we were all fine with letting her go when the time came.

CaringSister54

 
Old 04-14-2010, 01:27 PM   #29
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Re: Hospice wants me to stop feeding my dad

If your father has not signed anything expressing his view on this matter then the decision is yours. But I hope you will make the decision for your dad and not yourself...it can be difficult to know the difference. None of us want our parent to die. I have lived for years without my father now and though I miss him, my life has gone on and with it I take his love and guidance with me where ever I go..

My mother signed the living will, as did I and my husband. No feeding tubes for us. If there was hope and the reason was for something other than dementia it would be a different story but there is no cure for dementia. When the end comes, the end comes.
We can try any method to coax or cajole someone back but dementia will win everytime.

I am so sorry you are going through this. You sound so frightened and alone. I hope you will stay with us through this ordeal. We will do what we can to guide you through.

Love, Meg

 
Old 04-14-2010, 02:50 PM   #30
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Re: Hospice wants me to stop feeding my dad

Princess, go ahead and ask siblings to give you a break. Sometimes even an hour or two can help. My husband's daughter has cystic fibrosis, and one of the parts of that disease is an inability to digest food. The proper enzymes just aren't there. She is only 30 and for years now she has had a variety of things done to try to get her nourishment. Stomach tubes have NOT been a favorite, didn't really seem to help all that much. I guess what I am saying is that it isn't just a matter of putting food into a body----if the digestive system isn't working just putting food in won't help. Doctors encourage a lot of things, not because they work, but because the doctors are afraid of getting sued. One doc I know of was treating a man in his 80's who had signed all the paperwork for no extraordinary measures to be taken, including a feeding tube. The guy's sons, both of whom were lawyers said they didn't care what their dad had signed--they wanted the feeding tube. The doctor went with the sons since they could cause more grief than their dad could. Try to separate your head from your heart here, Princess. Your heart is breaking, but your head has to take charge and use common sense. Death of a parent is not pleasant, but it is not abnormal either. Think about it----everyone has to go through it! Or almost everyone. You can do it. Talk to your clergyman if that helps. Ask yourself, do you WANT your dad to suffer just because you can't let go? Of course not! What if God really wants your dad with Him? He may have other work for your dad to do! We just have no idea how these things work. Princess----let go and let God! We are here for you. Lynne/Blue
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