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Old 04-14-2010, 07:59 PM   #31
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Re: Hospice wants me to stop feeding my dad

Princess... it is not about Dad now. It is about your fear. You are not ready to let him go. You want to be sure you have done all that you can. You have to take him to another hospital for yet another opinion. At some point you are going to have to accept that Dad is not going to stay with you for long no matter what you do. Think about it. He is now 70 miles away from you instead of close to you so you can go immediately if necessary. He has strange doctors and nurses poking and prodding him instead of those he is familiar with taking care of him. So you can have a few more days? Take a step back and look at this from Dad's perspective.... would he want this?

It has been only a short time since I was right where you are. I do know your struggle and I do know your pain and I do know your fear. Did I want my Dad to die... HELLO NO!!! He was my rock and the one who grounded me. But that was my wish. When I realized that it was not about me but all about Dad I was able to accept that it was inevitable and let him die with peace and dignity surrounded by his wife, daughters and grand daughters. He went peacefully under the care of Hospice with no medication or feeding tubes. I had to let him go for him...

As for your siblings. I do hope they know exactly what the situation is with their Dad. If they have never visited him I am a strong believer that they need to be informed and be given a choice of what they want to do now. He is still their Dad too. I had two sisters that chose not to come that last few days but two of us were there. It doesn't matter if they come or not... but you HAVE to give them that choice. Perhaps they can help you get through this difficult times... and they might want to say good bye to their Dad.

You don't know how you will get through that last moment but you will. You will cry until the tears are dried up and then you will go forward through the services. It will not be easy but you will keep going forward. It is the end of his life, not yours. You will miss him and grieve for him. Then you will find your footing again and go forward. This is what he would want for you.

Please stop doubting and second guessing. Just let it happen as god intended it to happen. Then find strength where ever you can to go forward. Don't over think... just let it happen.

Love, deb

 
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Old 04-15-2010, 01:47 PM   #32
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Re: Hospice wants me to stop feeding my dad

Princess,

Trying to stop your daddy from dying is like trying to stop the sun from rising. There is nothing you can do about it. having followed all of the posts, you, my dear, are being selfish. You want to keep you daddy, no matter what the cost to him physically because you aren't ready for him to die.

I wasn't ready when I lost my daddy two years ago. He died of an aneurism and he had vasuclar dementia also. Five weeks laster the home called us and said that mom was unresponsive(during church yet) and we needed to come home. I sat with her for four days before she left me. She wasn't eating or drinking anything. And I would have never ruined my mother dignity by putting a feeding tube in. thank God both of them had left advance directives against any artificial means.

I don't think that any of us are ever ready to lose our parents. To be truthful, I never, EVER considered that my parents would die. Some how they were going to be with us forever. It cut me off at the knees when I lost them 5 weeks apart. I was so grateful for this board. It was the wisdom of the elders that kept me sane and stable.

You need to listen to the voices here. Many of us have been through this already. Our hearts are aching for you and your dad...and your fear. Several of us know how hard the steps are that you are taking and how awful the path feels under your feet. But honey, no matter what you want, God has other plans for your daddy and you can't stop him.

Take a deep breath and let god take his course with your father. He never shuts a door that he doesn't open a window you know...Death is nothing to be afraid of-except we are never quite ready for it, it seems.

Peace be with you....

 
Old 04-16-2010, 04:48 AM   #33
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Re: Hospice wants me to stop feeding my dad

Princess,

Letting go of our loved one is the hardest thing we have to do. My dad and myself did everything we could for so long in helping Mom live. There comes a point in time that you have to help them die. It is truely one of the most difficult things to do. I know with myself and I know with dad we were not ready to do that with mom. For so long we fought every battle Mom went through. We were there to get her through so much. Yes, each time she did rebound, but when I look back now I say: my goodness what that woman went through. It was not until the Doctor sat us down and told us Mom was actively dying as we spoke that I realized the end had come. That is when we gave the ok for no more measures to keep her alive... no more dialysis.... no more medicines.... no more antibiotics. It was time to let her rest in peace.
Yes, at first I felt like I was giving up on my mom by doing that. After all we had gotten her through some very tough times before. We can surely get her through one more time. I kept saying to my mom in my time alone how sorry I was.... I told her this everyday for days.... months..... after she passed. For some reason I felt I abandoned/let her down.... I learned from everyone on this board that has gone through this that it was Mom's time.... It was time for rest.. There comes a time to live and there comes a time to die.

My heart truely goes out to you. Please take heart to what all the others have talked about on this board. That is what helped me through it...
Come back and post we are all here for you...

Love pauline

Last edited by polina; 04-16-2010 at 05:00 AM.

 
Old 04-16-2010, 07:30 AM   #34
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Re: Hospice wants me to stop feeding my dad

Quote:
Originally Posted by DGabriel10 View Post
Princess... it is not about Dad now. It is about your fear. You are not ready to let him go. You want to be sure you have done all that you can. You have to take him to another hospital for yet another opinion. At some point you are going to have to accept that Dad is not going to stay with you for long no matter what you do. Think about it. He is now 70 miles away from you instead of close to you so you can go immediately if necessary. He has strange doctors and nurses poking and prodding him instead of those he is familiar with taking care of him. So you can have a few more days? Take a step back and look at this from Dad's perspective.... would he want this?

It has been only a short time since I was right where you are. I do know your struggle and I do know your pain and I do know your fear. Did I want my Dad to die... HELLO NO!!! He was my rock and the one who grounded me. But that was my wish. When I realized that it was not about me but all about Dad I was able to accept that it was inevitable and let him die with peace and dignity surrounded by his wife, daughters and grand daughters. He went peacefully under the care of Hospice with no medication or feeding tubes. I had to let him go for him...

As for your siblings. I do hope they know exactly what the situation is with their Dad. If they have never visited him I am a strong believer that they need to be informed and be given a choice of what they want to do now. He is still their Dad too. I had two sisters that chose not to come that last few days but two of us were there. It doesn't matter if they come or not... but you HAVE to give them that choice. Perhaps they can help you get through this difficult times... and they might want to say good bye to their Dad.

You don't know how you will get through that last moment but you will. You will cry until the tears are dried up and then you will go forward through the services. It will not be easy but you will keep going forward. It is the end of his life, not yours. You will miss him and grieve for him. Then you will find your footing again and go forward. This is what he would want for you.

Please stop doubting and second guessing. Just let it happen as god intended it to happen. Then find strength where ever you can to go forward. Don't over think... just let it happen.

Love, deb
All my siblings know what happening I have called them so much I am tired of calling.
1 of his sons even said He hasn't done anything for me so why would I come see him?

Anyway, all I want is for my dad to have a feeding tube put in. those doctors don't know how my dad and I interact at home. Dad still can follow commands, still walks with assisance, I still take him out on the lake to fish, he may hold the pole and fall alseep but when I say dad your gettin a bite he wakes and trys to catch the fish. He always misses it of course because of his slowness. The fish catch themselves. Someone said I am selfish, no I am not, my dad once told me that he wanted to be resusitated if he died. I have told the doctors not to. So, this tore me apart to go against dads wishes. Anyway, I am going to an ethics committee today. to find out why they are refusing to put it back in. I walked in my dads room and imediately he knew me, he took my head in his hands and held it stroking my cheeks. He had so much love in his eyes. He knows me and I am saying to them dads dementia is not as bad as they are saying, its due to the strokes mostly reason he can't swallow. All I want is for him to have a chance to see if he can still do those things like going to the lake again even if its in a wheelchair. He has never been in wheelchair always walked. Whats wrong with me wanting that for my dad, why is that so selfish. Yes I want him to live longer anyway, I will make my decision based on this meeting. Thanks to all you for your opinions but now I have to focus on my dad. Goodbye. May God bless you all

 
Old 04-16-2010, 08:08 AM   #35
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Re: Hospice wants me to stop feeding my dad

I am hoping that the ethics committee meeting will clear things up for you.

Love,

Martha

 
Old 04-16-2010, 08:56 AM   #36
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Re: Hospice wants me to stop feeding my dad

If your Dad is ripping out his feeding tub it is never going to work. As much as you want to believe that the dad sitting there is the dad of old that is the one point that says it's not so. I know you are hurting and want your Dad but I just ask that you listen to what the ethics committee tells you since they have come to the same decision that hospice and the other hospital did.

You were absolutely right to inform your siblings. It is up to them what they do with the information but you will always know that you have done what was right

Good luck princess... I hope you find the answers you need and the peace that you want.

Love, deb

 
Old 04-16-2010, 01:09 PM   #37
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Re: Hospice wants me to stop feeding my dad

May God give you strength to get through the coming days and nights. May he guide your thoughts and actions and may you find peace and comfort. You are in my prayers.

 
Old 04-18-2010, 10:46 AM   #38
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Re: Hospice wants me to stop feeding my dad

I am in the same situation. My Mum has dementia and has had a stroke. Her swallow is gone and the only option seems to be the tube. However she keeps pulling it out. Option is to put mits on her to stop her pulling the tube out but is this really giving her any dignity? I want to her to stay with me but the dementia is so bad now that I dont really know if she is here any more. Life is like a roller coaster with each day bringing its ups and downs. I am an only child so there is just me and my Dad visiting the hospital. I have a demadning job so it is exhausting getting to the hospiatl in the week but the guilt is worse.
It is terribly lonely but I still dont want her to leave me yet..
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Old 04-18-2010, 04:01 PM   #39
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Re: Hospice wants me to stop feeding my dad

Huwey, we are never ready to let go of our parents. The hardest thing I have done in my life was to let my Dad go. It was just over a month and a half ago. Medical miracles and his own will power had kept him with me for 32 years. At some point you have to give his soul over to whatever you believe in and let him go.

He had signed a medical directive concerning feeding tubes so I truly felt the decision was out of my hands. But even if that had not been the case I didn't have the heart to try to keep him here as he was. I do believe there are situations worse than death and physical presence is not what truly counts. My Dad was no longer the person he used to be. It was time to let him go.

I hope you find the peace that you need, the courage that you need, and the determination that it takes to do what is right for your Dad. My heart goes with you because I truly do know the struggle you face.

Love, deb

 
Old 04-18-2010, 06:24 PM   #40
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Re: Hospice wants me to stop feeding my dad

I tried to look at it from another point of view.

What if it was me in that bed. Would I want to be kept alive for my family to have to deal with the stress and pain? And see me like that day after day?

NO. I would not want them to have to go thru that no matter what. Therefore I had a peace of mind when I signed for my wife to have no life support or feeding. It's just prolonging them passing for a day or a week. And no one has any quality of life.

Just my opinion.

 
Old 04-18-2010, 08:37 PM   #41
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Re: Hospice wants me to stop feeding my dad

Ok...let me ask a question.

If a person has had a stroke and cannot swallow as was noted in a previous post, is that where hospice comes in and makes it bearable (pain free) for the patient to then ride out those last days with no nourishment..(feeding tube) .

We went through the NO feeding tube for my cousin but she was unconcious. She lived another 13 days but felt nothing. We don't regret the decision that was made in that case. But I wonder what it is like for the patient if they are aware and unable to swallow but because of their current stage of AZ no heroic measures are implemented.

(took me all day to get into the site. I got my user name and password all mixed up. I had to clear out my "cookies" or something technical like that and had to sign back in)

Love, Meg

 
Old 04-18-2010, 10:19 PM   #42
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Re: Hospice wants me to stop feeding my dad

Meg, that is exactly what happened to my FIL. He broke his neck about three years ago and was in rehabilitation with a halo brace for months. The dementia progressed and he had several strokes afterward. The last stroke he had paralyzed his ability to swallow and took away his ability to speak. He would not leave the medical tubes (IV etc) alone so they knew a feeding tube would not be appropriate. The first time I went to the Hospice house to see him he was alert enough to let us know that he wanted the hunting show left on the TV and I am sure he recognized us. It was not an easy decision but I also knew he would not want to be in yet another care facility hooked up to tubes with his hands restrained. That to me is not dying with dignity. It was 10 days between his admission to Hospice house and his death. Difficult? YES!! But when you look through their eyes instead of your own there is a different understanding. The way I look at it... if medical procedures will give you a better quality of life then it is good... if it just prolongs the inevitable it's not what I want. That is why I also have a signed medical directive.

Love, deb

 
Old 04-19-2010, 05:30 AM   #43
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Re: Hospice wants me to stop feeding my dad

My sister's MIL is in this situation right now. She's 91, multiple strokes (mostly TIAs), cannot swallow properly as a result. She can barely get a little water and applesauce down with special feeding techniques. They've taken her off all meds except morphine and Atavin. So, she's pain free and comfortable. Hospice has told us probably less than 2 weeks before she passes. Very sad to see her like this but we know there is no hope for healing and making her comfortable during what time she has left is what should be done. I went by to see her Friday and just sat a while. Held her hand a bit and she barely even stirred.

 
Old 04-19-2010, 07:34 PM   #44
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Re: Hospice wants me to stop feeding my dad

Deb...was your FIL sedated so that he was in no pain?

Titchou, pain free and comfortable. That is what I was wondering about.

My mom isn't there yet but I'm aware it could happen anyday if she had another stroke...there is no residual effect right now from the last and only TIA she has had.

She is always clearing her throat. I leave her hard candies to suck on. So I wonder if that is the beginning of not being able to swallow. She still is able to get out and about but I notice that one thing. That throat thing.

Love, Meg

 
Old 04-19-2010, 09:44 PM   #45
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Re: Hospice wants me to stop feeding my dad

FIL was given what he needed for pain Meg. At first he was "awake" and there was some recognition but that later went away. There was not furrowed brow or wincing which is two of the pain signs they look for. He just drifted further and further away, sleeping more and more, until his time came. He did have more pain meds than Dad did but he lasted for about 10 days.

Dad had the pain meds available but didn't use but two doses that last five days and those were when he was cleaned, changed, and repositioned. He had nothing the last 18 hours.

Each is different and I found that the Hospice nurses are very aware of non verbal pain indications. I have also found that they don't over medicate. In both cases I couldn't as for better treatment of my loved one. And I am yet to go through this with Mom.

Love, deb

 
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