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GrievingSon

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This is going to be a long post but I'm so terrified and I need guidance. I will start from the beginning.

3 years ago my dad ended up with foot drop, CT scan also showed pinched nerves in his back, he had back surgery and began walking with a brace. 6 Months later he fell at work and broke his hip, he never did re-gain movement in that leg. We always thought it was back problems and he just needed another surgery..

Another year goes by, he ocassionally says he has a "tickle" in his throat, and sometimes fluids go "down the wrong pipe" but he's okay he says. In the afternoons, dementia like symptoms start to set in, I get very scared. Why is he able to talk to me so well in the morning, but in the afternoon he can't answer a yes or no question correctly? Things like "Do you want Mc Donalds or do want Taco Bell?" are answered with "Yes" "No dad let me help you, which one do you want in particular?" "Yes" I would get so frustrated because I didn't understand and I feel so bad.

Time goes on and eventually his hands begin to show signs of weakness and they begin to look bad, how is it spreading to his hands if his back is the problem, I asked over and over.

3 years after the foot drop, he develops a really, really bad cough. Pneumonia.. I think okay no big deal, a few weeks in the hospital and he's going to come home with me. He did manage to come home.. For a day. He had to call 911 because he couldn't breath.

They tell me he's not strong enough to cough up the secretions in his lungs, they send him off to UCSF and I get a call a week later.. "Your fathers dad had ALS, and he has it too" What in the world is ALS I thought? How could this be? I cried, and cried. A grown 29 year old man, I'd never cried in 20 years, I was in agony.

Beds are full, takes two weeks for him to come back to the local hospital, and by the time he comes back, I'm able to talk to him the first day. Although he was anxious and I could tell he was miserable, I say it's going to be okay dad, do you want me to let you rest? "Yes, all I want to do is sleep in here, can you please shut the door?" "Okay dad, love you and im sorry"

The next day, he wasn't able to focus, he would look at me every few minutes in a daze, then go back to sleep. He would grab a glass of water and drink it laying down in bed and I'd have to race to raise the bed every 5 minutes, this repeated for almost an hour. Then he went on to start grabbing his urinal every 5 minutes saying "I don't have to go yet" "well don't go dad it's okay if you dont have to" but then he would keep trying and he would say "I'm afraid they're going to put that tube in me" I said "no dad, they aren't, it's okay." Then lunch time came and I watched him struggle so hard to eat, one small bite at a time, although he didn't choke, you could tell his throat muscles were effected.

At this point I'm scared and someone tells me to ask for a palliative consult.. The palliative director comes in and says "This is going to be a hard conversation, I know your dad is still there in a sense, but you have to realize that he's already gone." "There's been studies, feeding tubes and hydration just prolong the suffering, it's best if we move on to comfort care." At first I cry and cry, and I say okay doc, you know best. I go back and tell my dad "I'm going to let them put you on morphine, is that okay?, I'm so sorry dad, I love you" he said "Yes, thank you. I love you too" and that was the last time I would have a coherent conversation with my father.

The next day I come in, he is restless, 25 mcg/hr fentanyl and .5 ativan, he's grabbing at the bed and uncomfortable. I ask them to up the meds because I can't stand watching him suffer. They tell me "he won't be thirsty, or hungry, he won't feel it." I come back the next day to find out he'd ripped his IV's out and I tell him I'm so sorry and I'll NEVER know what he said next.. Either "I need to die" or "I need to drink" but his mouth was blistered and sore and nomatter how sedated when I would touch his lips with the sponge he would come to and try to drink from it, but he bit down on it with all his strength and I was so scared. "Dad, please let go of it, you're scaring me I don't want you to choke" he never did let go, I had to pull it from his mouth. Was he THAT thirsty, or was it an involuntary bodily movement? Is it delirium, or is he ripping his IV's out because he's suffering tremendously? Or is it normal process, and he was ready to go? I'm so torn. Please someone help me understand.

The last coherent thing he would say to us was "I need a pillow" but then when I gave it to him, he took it out and didn't want it. I said "Dad, I'm going to have them give you more pain meds, I hope you know I'm doing what I think is best for you" He somehow nodded yes. I said "You understand right?" and he nodded yes.

Am I letting them dehydrate him to death? Should I stop this and let him come too and try to talk to him? It's been 5 days with no fluids, the nurses told me nothing by mouth because it would prolong his suffering. They upped his fentanyl all the way to 90 mcg/hr and he's finally sleeping. He's never had opiates before, I can't help but think he isn't ready to go and I let the doctor talk me into a huge mistake. Is this normal part of grieving? Did I need to end his suffering? What do I do. Will he ever forgive me? I can't take this wondering..
 
GrievingSon, I know you're in a really rough place right now; you have been for a long time, and you will be for some time to come.

Ripping out the tubes? Actually, the fighting is kind of normal--he's upset and he has a right to be. But the doctor should be able to adjust his meds so he doesn't get upset any more.

These days, doctors can keep your body alive for a very long time--months or years. But as your dad's doctor has pointed out, "Who would want to live like that?"

Let me give you some examples that maybe you can relate to...eventually.

In the last couple of years, I've buried my wife, my father, and my mother. My wife had ALS, my father had dementia, and my mother had Congestive Heart Failure so her lungs filled up with fluid. In her last weeks, she had very little cognition, and could only say the word, 'help,' over and over, while looking straight ahead. It seemed that her mind had died already.

My mother had a pacemaker that kept her alive automatically, sitting and saying 'help'. It was heartbreaking. But we made the decision that she would not want to live like that, so my sister and I told the doctor to turn off the pacemaker. Her body survived one day without the machine. I'm very glad we ended her suffering by turning off the machine. We should have done it earlier.

My father was taken to an ICU, where every doctor and nurse told us they would keep him alive. Although he could not speak or communicate in any way, he was clearly fighting and suffering. I persuaded the doctor to stop trying to save him, and let him go quietly. I'm very glad we ended his suffering by unplugging the machines.

My wife was a doctor. She knew death very well. She got ALS. She gave us orders that, when she couldn't breathe enough air to live, we were not to help her breathe. Instead, we were to push morphine. A couple of days later, her heart stopped. During the entire last week, she was not in pain, she felt no 'air hunger,' and she was not afraid--that's what morphine does. It removes your fear of dying so you can just go to sleep quietly. I'm very glad she chose that route.

When it's my turn to go, I hope somebody unplugs me so I don't suffer too long.

You're concerned that your dad might not forgive you. Of course he will. He loves you and is proud of you. I think you might mean "Can I forgive myself?"

On this forum, every person with ALS has already received their death sentence. ALS is doing the killing, not the morphine. The morphine is removing the suffering.

Also on this forum, every caregiver--usually a spouse or a son or daughter--is going to outlive their loved one. It is very important that the survivor take care of themselves. Plan for your future. You dad does not want his ALS to hurt you as well. He wants you to live a happy and successful life. That's what all parents want for their children.

So be assured: he forgives you. You just need to forgive yourself. The best way to do that is to help minimize his suffering if you can.

I take it he is in a facility. The doctor knows how to end a life with minimal suffering. The patient, your dad, might not cooperate--he's not in his right mind. But let the doctor and the nurses do their job. That's the best you can do for your dad.

I was sad. I had sleepless nights. So I saw counselors. A psychiatrist helped me cope with medications. After a year, my sadness had reduced a lot. After two years, I only felt enough sadness that it does not interfere with my sleep, my work, or my enjoyment of life. After three years, I am quite happy, enjoying life like my wife would have wanted for me.

You will have a good outcome from this. Talk to the doctor. Help the doctor relieve your dad's suffering. You'll be happy you did. Go see a psychiatrist and they can give you some meds and send you to a good counselor. There is life after ALS, and you can do it.
 
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I'm sitting here alone in the 3 bed room home we lived in for the last 10 years. I was his care giver for the last 3 years, a few months ago when he could no longer use the restroom by himself he looked at me like he wanted to cry and said "you're the perfect son for me, thank you, thank you" and I will always remember that. I told him that last night, that I'm so thankful that I have that memory.

I read your response and literally poured my eyes out and screamed out loud, but I think you are right, he doesn't mean to rip the IV out, he's not in his right mind and of course it's going to feel bad.

I feel in my heart that when I said "you know im doing whats best for you" and he nodded yes, I think he understood. It's just so hard for me to watch him so restless, but I also know that high of a dose of fentanyl should have someone high as a kite.. I hope he is having the most peaceful death possible. I only have one huge regret and that is not giving him water when he wanted it, but I think he knows I didn't want him to aspirate in his last days. They told me even sucking on a sponge it might get stuck in his throat and feel like drowning. I pray to god he knows I wasn't dehydrating him on purpose.

Your response has done more for me than you will ever know, thank you.
 
Firstly let me say how sorry I am that your father has this awful disease. I also offer you my empathy, and can tell from your words that your heart is in the absolutely right place.

My husband was bulbar onset ALS with FTD (a type of dementia that some PALS also suffer).

When my Chris reached the end stages, I withheld food and fluids (even though he had a peg tube into his stomach) and with support from palliative care I kept him well medicated so that he did not suffer. I didn't have to give him terribly large amounts of the two meds we were given, but I gave them often so that he did not have the levels in his system drop and then cause him distress.

I had longer to come to terms with the diagnosis, and to accept that he was terminal and that there would be a point where he would not want to stay alive. Fortunately we had discussed this before his dementia set in, and so I knew what was what.

It is not easy - but you cannot save him, cure him, or really do much for him except sit with him, wash his face gently, massage his hands gently and TALK. Tell him over and over all your best memories of your life with him and what he has meant to you. It is well known that even unresponsive patients can nearly always still hear.

With the meds he is on, this talking to him of your love will give him the most peace of anything that can be done. Make sure you say everything you always wanted to say, and don't be afraid to say it many times over. His perception of time will be shot, so your voice soothing through to him of your love and memories will be a constant balm.

Any physical contact like washing his face, rubbing hands or feet will also give him a connection to you no matter what he seems to be aware of.

I would certainly want this done for me, and your father will want your torment to end even more than his own.

Mike made one of the best replies here that I have ever read, and I've had a good cry as well reading your story and Mikes reply.

We do understand, Mike and I have done it, and we have even survived afterwards and are making new lives without the one we loved most.

Talk here as much as you need.

Over that last 4 days for my Chris, everyone here held my hand as I cared for him, and it meant a lot to me. I would like to hold your hand now.
 
Grieving son, you are at the most difficult place. Try to find peace that your dad will no longer have this disease. You are giving him the best death. Your love shines thru! Steph
 
Grieving I'm so sorry you are part of this ALS nightmare, and for sure in the toughest part of it now. I too was my mom's primary caregiver and had to advocate for my mom's care all the way to the end. It is the heaviest responsibility anyone can ever carry- to know when your loved one is near the end, to guage their physical and emotional comfort, and to advocate for and carry out whatever is necessary to ease any suffering. Of course you cannot help but second guess yourself, as did I, but you have to keep the perspective that every decision you have made along the way to care for your dad was out of love and it still is.

Mike's response was so eloquently said that it struck a nerve with me. I was in your position with my mom three months ago. She was under intensive comfort care in her home and I was by her side. Some of the nurses were right in step with guaging her distress and responding with a proper dosing of meds and some were not- my mom would thrash about trying to get out of the hospital bed. This required me to have to "demand" adjustments to her prescribed dosing from the hospice doctor who was not on site. Don't be afraid to be your dad's voice at this stage you have only his best interest at heart.

Once he is gone and you have the perspective of hindsight it will become clearer to you that your dad was at the end of life and that you did not do anything other than to make it as peaceful as possible. This has helped me to replace the memories of her last week with the memories of her life before and during ALS, but not the end days.

Your dad is so fortunate to have you there for him. And how fortunate for you to have received that sentiment directly from him. All of us here on this forum are here to support you and to carry you through.
 
Like Mike says...all of it, every line. Grieving, I am so sorry you are having to go thru this...there are no words. He does know, exactly how you feel, rest assured. Love perseveres all this.

tc
 
I cannot say anything more than what has been said so well by Mike. Watching my mother die last month and making the decisions for her passing was so hard. I doubted every decision that I made near the end. I knew I did not want her to suffer any longer than she needed. She was ready to go and the morphine and Ativan helped to make it easier for her. I grieved and am still grieving. I am doing better and have been able to put my guilt to rest. My mother would want me to honor our time on this earth together by not letting my mind exist with only sad and guilty thoughts when thinking of her.

Let the team take care of her pain meds and trust that he will not be in pain. It does take some time for the battle to end but it is pain free. Take the time and spend it with him. Talk to him and let him know you are ok. I know that even though my mom could not respond to me that she heard me.

My thoughts are with you and I hope you will be able to find peace when this is over.
 
Dear GrievingSon,

How lucky your father is to have you! What a loving son you are. The sobbing is good, please don't be embarrassed by it.
Mike and Tillie said it so well.

Peace be with you and your father.

Sherry
 
He will never - ever blame you. I'M SO SORRY FOR YOUR PAIN. It will be over soon, he will not be in pain anymore. I'll pray for you.
 
I left the room for 5 minutes and said what I needed to say before I did, and when I came back, he was gone. I have a feeling that even in the very end, my Dad wanted to protect me from watching him go.
I feel truly blessed to have been able to express my love for him in the last 7 days, I know that other people are not always so fortunate. Every time I would say "Dad, I know you love me" his eyes would move, even though he couldn't open them.
The relationship I built with my dad over the last 3 years has had it's ups and downs, but anyone who's reading this who has ALS, I want you to know.. I would of done it my entire life a million times over for my dad, there is nothing MORE fulfilling then LOVING a parent when they need you.
I will always question my decision to stop giving him fluids by mouth, but deep down I know that he understands I wanted him to go with dignity, and I didn't want him to suffer a minute longer than he needed to.
Goodbye Dad, I will always love you. 12:45 3/24/2016.
 
Well done.

Not many people get to answer the call of duty when others are in extremis. Proud of you.
 
I am very sorry for your loss but you did the right thing for your dad even though it was hard for you. He is proud and grateful. Please don't question your decision. It was made unselfishly, with love and with knowledge of your dad's values and wishes.
I wish you peace and comfort. Your dad is free now
 
GreivingSon, I too am very sorry for your loss. You expressed unselfish love for your father. Your dad no longer has to feel pain and struggle with an unbeatable foe. You did your very best and I am absolutely certain your father felt your love, right up to the end. You will go thru grief and second guess yourself, but never, ever forget the love and support you gave to your father and the fact that you were with him during this horrible ordeal. I hope you soon have better days and some peace soon.
 
Son,
He understood everything you told us, and is at peace now. It will take some time for you to know that without asking yourself, but in time, you will. I'm sorry for your loss but glad that you were at his side. Thank you for walking the path with him.

Best,
Laurie
 
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