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califsand

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Yes, me again and still on an agonizing emotional teeter totter. My father continues to suffer and go downhill and new symptoms are developing. He has an eye infection, probably pnuemonia (he won't let them xray so it's speculation), constant pain & anxiety and now his feet and hands are swelling and ice cold to the touch (circulation probably).

Last night when I was there with him he was very noisy, indicating discomfort and pain, and he sounded like he was drowning on his secretions. He had vomited earlier in the day so they had him well medicated but it wasn't doing much for the pain. He has fear in his eyes. Pain & fear are NOT the way he wants to die and not the way I want to see him go. I have again stayed home from work and have a message in for his Dr. to call me. I'm planning on talking to him about a morphine pump and will discuss a plan to reduce and eventually stop his feedings.

I know that my Dad is trying to live long enough to meet his grandson but the baby is not due until October. It is like a toss up between keeping him lucid enough so he has enough will to live to try to hang in there or medicating him enough so that he isn't suffering like he is right now. He really can't communicate anymore and as his power of attorney, the decision is mine. I alternate between knowing that this pain & fear is NOT what he wants and between insecure feelings because of his long standing desire to meet his grandson. I can't imagine seeing him in this agony for another 9 weeks... that's such a short amount of time and an eternity at the same time. On one hand he has hung in there for this long part of me wants to do everything in my power to help him hang in there... on the other hand, his body is failing, he is in emotional and physical pain/distress and I want him to know it's okay to let go. The indecision about what to do is wrecking me right now!

I have talked extensively with my family about this and ultimately they all have the same mixed emotions... none of us want him to be scared & in pain, but we are afraid to take away his ability to fight long enough to make his goal. Nobody has a firm stance on the subject and cannot offer me any guidance about what to do. Everyone, including the Dr. reminds me that it is a decision that only I can make, based on how well I know Dad, what my instructions from him are and what I feel is right. How can I decide what is right? Mostly I lean towards severe pain management and giving him the release from pain so that he can allow himself to be unafraid and to let go, let himself out of this misery. I know he is conflicted, I can see it in his eyes and I am sure that it is a relfection of how I feel as well.

Have any of you been in this position? How did you make a decision? How do you determine what is best when everyone only echoes what you are thinking and feeling back at you without offering any real guidance for such a decision? I can write about it until I am out of thought and I still end up on a teeter totter, leaning one way and then the other... on a bad day I want to order full sedation, on a good day I feel insecure and want to encourage him to hang in there. How many more bad days can I let him go through before I make up my mind? Is it selfishness to encourage him to hang in there when I know that he needs my permission to let go?

I've always been a decisive person, I make up my mind and then move forward whether it is right or wrong. This inability to act is killing me! Any advice or suggestions, or personal stories that relate would be SO valuable to me right now.

Thank you,

Sandy
 

brendapals

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Sandy,

My heart aches for you. It is so hard to know what to do at a time like this. I know from past experience as a nurse that sometimes the feeding can cause a build-up of fluid in the lungs, which is not good.

In the 7 yrs that my FIL lived with us, my hubby thought he had to keep his father alive forever. Yes, it is the toughest time of your life right now, but hopefully it will be a journey you will treasure as a memory.

Get his doctor on board with pain management as soon as you can- it will let him rest better and you as well. Sometimes God makes plans that we are unaware of, the new baby- is that you expecting? Remember this forum is a great place to find comfort, so please keep us updated. Take breaks often, and let yourself rest.

Keep the faith,
brenda
 

brooksea

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Sandy,

I'm so very sorry you are having to go through this.

I've not been in your situation before, so can offer no advice. Perhaps some other members will be able to help you out.

Just know that I am thinking of you. Please take care of yourself!
 

paula-jane

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Sandy,

I'm so sorry to hear you struggling through this... you are not alone... keep this in mind. I know exactly where you are and it is a gut-wrenching position to be in. The only advice I can offer is this; you were given power of attorney for a reason, your father clearly trusts you to make difficult decisions for him when he is no longer able to, or when others might not be able to. He trusts that you know him well enough to know when he is ready. In my heart, I hope he is able to communicate this to you in some way. I know that this is easily said and not so easily done. You will know when the time is right to make these choices for him. Reaching out to family and this forum is perhaps your way of preparing mentally and emotionally to deal with these big issues. I hope that you have the strength and the chance to talk to your father about what you are struggling with. Even if he is unable to respond... it eases your pain and lets your dad know that you are loving him and doing your best for him. Do you have a pallative care team or a doctor who is able to come to the house to evaluate your father's condition and give you an idea of where he is in this disease?

I can share a little of my mum's last week of life. She knew she was getting close and requested to see her grandchildren. She had time with her family and we stayed with her day and night. She continued to fight and refused anything for the pain, specifically, a morphine pack. During the last 3 days of her life she was clearly in a great deal of pain but not able to fully communicate with us. She was in the active stage of dying and as her power of attorney, I made the difficult decision to hook her up to a morphine pack. Ultimately, this was my decision and it went against her wishes... but, her legal documents clearly stated that if she was no longer able to communicate her wishes and was in obvious pain that I was to do what I thought necessary to relieve her pain. I had the support of the family, in that they trusted and respected whatever decision I made and that I did not need to ask their permission to do what I thought my mum would have wanted and expected. I talked to my mum about everything I was doing, sometimes she would blink to let me know that I was doing right by her. Even when she could no longer blink... I knew she could still hear... and I talked with her right up to the end. I have no regrets at all and I know that she was pain free at the end.

Whatever choices you make, you will always have your father's love and support. Life has a way of moving right along... death sort of works the same way.

Take care... and if I've said anything to offend or that upsets you... I'm sorry in advance.
 

califsand

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Thanks all of you. No offense taken, I'm not easily offended! My father & I have always been very honest and open with each other which is why he trusted me enough to put me into this role. I have older brothers and younger sisters and while a couple felt slighted that he didn't ask this of them, they got over that long ago when they saw the dilemma's that it caused me at times.

My father is in Hospice care and today I spoke to some trusted nurses, our social worker and his Dr. They know my role and relationship and have agreed with me that it is time for a morphine pump. Tonight I will go tell him about it and explain that it will provided him a constant dose of morphine, a low dose for now to see if it cuts his pain & anxiety. The two siblings of mine whose opinions matter to me both told me today that I have their 100% support no matter what I decide and they both feel that if I think it is time for sedation that it must be. They all trust me and if anything, that scares me even more! A friend of my fathers actually indicated to me earlier that I may be being selfish and expressed a concern that I was making this choice FOR my father, instead of offering him the choice, out of desire to reduce my own stress. She is right and wrong at the same time... to see him afraid and in pain causes me considerable anxiety and HE is the basis of this decision. We will not be overdosing him or severely sedating him at this time, just trying to reduce his pain and anxiety level. Seriously, he is bedridden, cannot move anything but his right hand sometimes and his eyes. He can't adjust his body if he is uncomfortable, he can't hold his head up, he can't communicate except for the basics of responding to Yes or NO questions. He can hardly breath... it's the right thing to do for HIM and in doing the right thing by my father, it is the right thing for me as well.

Fortunately I have a good support system but even with them I can't help but feel very alone at times like this. :(
 

lynster

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I hope I have your strength

Sandy,
I can only hope that I continue to show as much caring and heart that you are when I have to face any of these decisions with my husband. We are all strong, and know that we can do whatever needs to be done for our loved ones.
Hang in there!
Lynn
 

Shane the Pain

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go 4 it

Hi Sandy:

i think if your dad has recently expressed hanging in there to see the grand baby, then Oct. is not that far away. it ain't easy, but its the end, if he wants it, support it. ain't no fun any which way. God Bless.

Shane
 

califsand

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Shane,

Good point however when the baby is born, which won't be for another 9 weeks or so, there is NO way that they will be taking the newborn into the Hospice environment. There is another patient there that has a non-treatable staff infection and the nurses have to glove, gown & mask up each time they enter that room. My father has pnuemonia and who knows what other types of infections at this point (he won't let them test) and there are others in and out that have everything from cancer to HIV/AIDS. It is not a place to take a newborn baby with a fragile immune system and my pregnant sister in law is no longer exposing herself to the environment there either. It's a tough call because we adore our father but my brother & his wife can't risk exposing little Tom (named after his grandpa already) to the potential health hazards.

Not to mention that my Dad's pain level is so intense that he is constantly moaning. The morphine will hopefully the edge off and if it sedates him and he is not in as much anxiety, that is a risk that I am willing to take. There is no reason he should torment himself, for any length of time or for any reason. Last night I watched him struggle for every breath and he smiled at me in between each bought of difficult breathing. Morphine is supposed to loosen up the chest to make breathing easier. One step at a time, although this is a huge step because I am making the decision for him and I hate to do it but feel it is the best thing to do for him.

I've always supported my Dad throughout this and have supported him hanging in there to meet his grandson. Although it is not his first grandson (he has 2 grandsons and 4 granddaughters) it IS the first child of my brother who is his favorite child and a baby we have all been waiting for, for a long time. I understand his desire and every day I talk to him about the baby and we look at the adorable ultrasound picture my brother & his wife gave Dad of the baby with his thumb up (just like grampa with the thumb) and I know its his motivation. I've promised him that I will make sure that Little Tom has a gift under the Christmas tree and on his birthday every year that is from his Grandpa, his namesake... and have promised to show him pictures frequently and tell him all the best stories so he feels he knows him. I do everything I can to help but at some point it becomes detrimental. He is 6 foot tall and weighs about 115-120 now. He can't unbend his knees, he grunts in agony with almost every breath, his extremeties are swelling... I cannot imagine him experiencing this level of pain, anxiety and discomfort for another 9 weeks. Maybe the morphine will help at a low dose and he will be around for the birth, he has suprised us many times before and I can't discount that. If that happens then my brother and his wife can try to think of a way for him to meet the baby. We'll have to cross that bridge when and if we get to it.
 

brendapals

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Sandy-

That is good that your dad has the morphine now. Hopefully you both can get some well-deserved rest! My thoughts and prayers remain with you- always remember what a blessing you are.
Keep the faith,
brenda
 

BethU

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Sandy, I am so moved by the struggle you and your dad are going through, and I know there's nothing I can say to help ease your situation. But it is clear that everything you are doing is for your dad's best interests and welfare. He was so wise to put you in charge, knowing that you would make the right decisions. I feel you are being guided to the right decision for your dad, and you will always know that you did not fail him when he needed you most.

God bless.
BethU
 

brooksea

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Sandy, I draw inspiration from you.

Thank you for telling your story about your struggle.

I cannot express the gratitude I feel for you relating the situation you are in. I don't know if that sounds quite right! But it helps to see what someone else may be going thru with their loved one.

I wish I could give you a BIG hug!
 

CindyM

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I am moved as well, Sandy. Your dilemma is certainly not easy! There is no answer to this that will not leave you second-guessing yourself. But your Dad chose you for a reason, and he obviously knew that you were the best choice. I, too, am offering hugs!
Cindy
 

califsand

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Hi everyone,

It is really hard to make these types of decisions. I know I'm well informed and I know what my Dad wants but it doesn't lessen the anxiety I feel taking over for him. Last night I went to see him and he was so happy to see me :) Big smiles for me when I asked if he wanted me to give him his evening cocktails... I had withheld them the previous night because he had vomited that day when he had his feeding.

Anyways, I got him a bit drunk and I told him that he would be getting a morphine pump hooked up today which would give him a constant dose of morphine 24/7. He gave me the biggest and most wonderful smile of approval, whew! He already gets morphine and codeine but it is irregular. He can still have that with the pump if he wants and I made sure he understood that. I promised him that I would monitor him closely to make sure it is strong enough to take away his pain and would try to make sure it wasn't too strong. His breathing was much better last night, which brings with it doubts but after all the meds we gave him the night before and the deep suctioning he is getting, it's expected. His feeding is down to just one 4 ounce can of jevity per day, not nearly enough calories to sustain him but his body can't seem to tolerate more than that right now. His feet are still very swollen and the area between his toes is turning purple & bruised looking. I examine him like a baby, even the Dr. commented on how I notice every little change. Well, that's my job! He also has developed a sore behind his ear from the oxygen tubes, grr! My poor little Dad! I feel towards him like he is my baby, weird but true. I want to wrap him in a blanket and protect him from the ALS, if only it were so easy! :(

Thanks for your support. This is hard on me, I often wish he had a wife that could make these decisions instead of me and that I had the luxury of sadness and watching from afar. So many of the people who love him have that luxury and I'm jealous of their freedom sometimes. I know that the caregivers here know exactly what I mean by that!

Take care,

Sandy
 

MtPockets

Very helpful member
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Sandy, I admire you so much for your dedication and love for your dad. As so many have already stated, I wish I could just give you a big hug of comfort for hanging in there through all of this. God sees what you and your Dad are going through. May He give you peace and strength to continue your mission.
Jesusgreeting.jpg
 

Mary Helen Barr

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Sandy, what you describe really takes me back to my father's last days. The hospice nurse said she has never seen anyone so pitiful as he was. Not able to hold his head up, difficulty breathing, difficulty swallowing, completely paralyzed, unable to speak, and had a huge bedsore that I could put a fist into. I was the only one who could decipher his barely imperceptible head movements to indicate yes or no. Everyone else in my family thought he was already gone, and my mother came in to his room and said we should call hospice to "come pick him up." I was horrified, because I knew he could hear the conversation. I knew the move itself would kill him at that point, and he wanted to die at home. When my mother left the room, I went over to him and asked him if he heard that conversation. I got my face right up next to his head, and watched very carefully. I could tell he nodded his head yes. Anyway, this is much too long to get into, and my mother and I totally disagreed about his care (he asked me to be the decision maker and the one to look out for him), but I just wanted to sort of let you know that he knew I was on his side, and had his interest and comfort at heart. I suspect your father knows how you are caring for him, and trusts you are doing the right thing for him. Nine weeks sounds like an awfully long time to be in the condition he is in, but you never know. I'm not trying to tell you one way or the other, just know that I feel like I've been there. Mary Helen
 
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