Wavering emotionally

[califsand]

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]

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

[jimercat]

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]

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]

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]

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]

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]

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]

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]

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

[jimercat]

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]

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]

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]

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.
http://i160.photobucket.com/albums/t172/ShakeyMarble/Christian/Jesusgreeting.jpg

[Mary Helen Barr]

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

[paula-jane]

Sandy,

I totally understand everything you are saying and feeling. You are doing a fantastic job. I hope you find comfort in that at the end of your day.

[mndireland]

Sandy,
Do you believe in life after death? Or that there is a God and there is a heaven?? I do, my father has been dead for 27years and ive always felt a presence in times of trouble, my mother is now suffering this awful disease. At night i pray to my Dad that he sits with her while she's sleeping and that he looks after her and meets her when her time comes. My mother has never believed any of this and yet lately she asks me am i upstairs when Im not as she can hear someone, i think its him. Anyway what im really saying is that, I believe my dad has indeed watched all of his kids and grandkids grow up, and he continues to watch us. I do believe that the spirits are around us, and that if you ask for help your loved ones will help you, so dont be afraid to ask. It will be sad for your dad to pass, but dont worry he will see your son and hug him when he can, and just think of all the great stories you can tell him about his grandad!
Some people say that maybe we are living in the hell, and heaven is so much better Im not sure i believe that, but I do hope they are going somewhere better.
I really admire your strength, I can only give advice but so far have not had to make these decisions, so your strength is an inspiration.
Take Care

[hboyajian]

Sandy, I am so sorry that your father is suffering such pain and difficulty. You are clearly a phenomenal advocate and caregiver for him. That alone is of great comfort to him, I am sure.I hope the morphine pump has eased his pain.

I had a thought I wanted to share with you about the baby, his grandson, soon to be born. Since it will not be possible for him to see the child in person due to the potential for transmitting germs, you could take a photograph, enlarge the image to life size ( or close to it) and place it on his chest like a hug. Maybe this is silly, but decided to share it anyway.

[califsand]

Thanks Mary Helen, I think you hit the nail on the head, or struck to the heart of what I'm saying. 9 weeks feels like an eternity right now and I will continue to take it one day at a time and you know, he COULD make it and if he does, I'm sure we will sneak the baby in there to meet him. Maybe the regular pain meds will help make it possible since he won't be in constant distress.

You guys are an awesome support and I appreciate all of you that have taken the time to come on here and talk to me about this. It's not easy, for any of us, especially our loved ones who have ALS. It is a great source of comfort to know that there is a place where I can vent and let it all out and the people there will understand, they will care and they will have real words of wisdom & support. I need this, not all the time but when I do, it is a life saver that you are all here. Thank you

[califsand]

Sandy, I am so sorry that your father is suffering such pain and difficulty. You are clearly a phenomenal advocate and caregiver for him. That alone is of great comfort to him, I am sure.I hope the morphine pump has eased his pain.

I had a thought I wanted to share with you about the baby, his grandson, soon to be born. Since it will not be possible for him to see the child in person due to the potential for transmitting germs, you could take a photograph, enlarge the image to life size ( or close to it) and place it on his chest like a hug. Maybe this is silly, but decided to share it anyway.


What an interesting thought! My Dad has always been a photographer, he would love something like that! :)

I just had a long talk with my Dad's nurse and they will increase his morphine tomorrow. He has been on the pump for a few days and it's not helping much. I hate to see him become sedated to where he can't smile at us but his body is in the fetal position, he has horrible nausea and obvious pain so I feel it is the right thing to do. He is down to 4 oz of jevity a day right now because his stomach is upset and I know that being hungry hurts as well. I have clearly advised the Hospice staff that if we have to sedate him to take away his pain that we should do that. :( I'm sure I'll keep you posted on how that goes.

[freddiesnetty]

I am so sorry to hear about this with your father, it breaks my heart, I remember when my mother had hospice to come in when she was dying of cancer, the only thing they would do is give her morphine suppositories. I remember thinking that this had to be the worst thing I would ever have to endure. I stayed with my mother for the last month of her life. I put my job, family and whole life on hold for her....littler did I know that, that was just the opening act for this, I am curious is your dad on a vent also? I got the peg part, and I thought that you had mentioned suctioning his secretions. Just wondering, my husband Freddie just got a trach and peg on the 30th of June. He really waited to late but wanted to go through with it. Today, i was doing some ROM on him and he told me that he was so thin....He is VERY thin......6'3 and maybe weighs 120. I had to tell him that this horrible disease is still going on just that know his nutrition and breathing is not compromised. Sometimes I think that he regrets all this. I was told that because he opted for the vent that he could go into that hospital and disconnect anytime he wanted....That I don't know how much is true...I am sorry I am just rambling...I hope all goes well and your Father does not suffer any longer...I will keep you in my prayers
lots of hugs,
netty

[califsand]

Hi Netty,

This is horrible stuff to go through, for sure. My Dad is also very thin, don't know his weight but I can see every bone in his body, especially disturbing now that he only wears a diaper... he doesn't want clothes and it is too hard to dress & undress him at this point anyways. Dad doesn't have a vent but has the oxygen hooked up under his nose. He's had the peg for a year & a half, his illness now at over the 6 year mark. The nurses use a suction machine several times a day to try to help him breath. Some days they put a thin tube on it and go all the way down into his chest, something that is VERY uncomfortable and scary for him and I absolutely hate to watch!

It's so hard to know what is right or how far to let things go. I sure do love my Dad more than anything and have made tons of sacrifices that I will never regret. I think I'm afraid to let him go, which is what the sedation should allow him to do. Someone recently suggested that my fear of telling him it's okay is because I don't really believe that it is. They said that I think I'm ready to let go but chances are, I'm not. It makes sense. Over the course of Dad's illness he has become my best friend and eventually, my largest responsibility in life. Being there for him overshadows everything else, including me. I'm scared to lose him but scared to see him going through this for so long.

Hang in there, that's really all we can do. We are powerless over ALS and what it does to those we are caring for :( My mom keeps reminding me of the power of the Serenity Prayer. I'm not religious but love the reality in those words. Acceptance is hard to come by, just when I think I am at that point, another curveball comes along and I have to start the whole process over again.

[MtPockets]

Sandy and Netty,
I am so sorry you are going through this. I have lost my mom, dad, mil, fil, in very similar situations. The family was at the bedside when my mother in law passed from cancer that she had fought for over 12 years. She was a sweetheart. I loved her as much as my own mom. She had a wonderful sense of humor. Yet she was in so much pain that the deladid and morphine could not control it.
As she lay there, we each held her hand and told her, mom it is alright to go on now. We love you and know that you need to get past this pain. Please know, that was very hard for us to say, because we wanted her to stay, but knew in our hearts she would not quit fighting unless we told her to let go.
There were about 10 of us family there and we each took a turn caressing her head and hand and comforting her as best we could. We kept telling her it was going to be alright to go on, to let go. She was a Christian and her faith helped her for years to handle what she was facing.
She finally after hours of this gave out her last breath and lay very still. We called the nurse and she said she is gone. We were all crying, hugging one another for about 5 minutes when suddenly she gasped a breath. We were shocked to say the least. The nurse said she is back? She lasted about another 10 minutes and then was gone.
My faith helped me understand and accept all the deaths in our family, as it will my own. I hope you find somewhere in your heart that little flicker of faith and let it grow to carry you through the days ahead. I pray for peace for you my friends and for supernatural faith to be in your hearts.

[califsand]

The Dr. doubled Dad's morphine yesterday evening and when I went and hung out with him it was nice to see him actually comfortable for the first time in ages. He was somewhat sedated but not too much to a point where he slept the whole time I was there. We watch Wipeout together on Tuesdays, which has him laughing his head off. He would doze during the commercials but when it came back on his eyes would pop open and he would laugh and laugh. His face lights up when he smiles and it was good to see that even though his meds were significantly higher, he was awake enough and alert enough to enjoy himself as well as share some of his beautiful smiles with me. I'm hoping that with the increase in meds he will be less anxious & afraid now that his pain & discomfort are reduced. Last night was a relief for sure.

[CindyM]

This is a relief to hear! I was so hoping htat you and your Dad would get some stress-free time together. Hugs, Cindy

[freddiesnetty]

I am so happy that your father is feeling "comfortable" I looked at your family album and what a nice family yall have.....I hope the best for yall. My prayers are with your family daily..God bless you!!
netty

[califsand]

Thanks everyone!

We upped his meds yesterday, again, valium this time. He is still not comfortable! I got a call during work from the nurse yesterday that he had spiked a 102.4 fever and didn't want to bed fed or suctioned all day. She said he was especially uncomfortable and ornery but who could blame him? My pregnant sis-in-law had talked of going to see him and I called to warn her about the fever and she insisted that I meet her there anyways. I wish I could properly express the look on his face when he saw her and she pulled up her shirt to show him that huge baby belly (she is due Oct 5th). We were hoping to try to get his hand on her belly to feel the baby kick but the baby was napping! I think between the nurse, the aide and myself we could probably get him into some position where we could get his hand there. Hard to do because his muscles have pulled his arms against his stomach and his legs won't straighten out anymore. We still plan to give it a try, hopefully over the weekend.

While we were there the nurse took Dad's temp and it had reduced to 99.4, whew! He still wasn't feeling good and I don't know if the pnuemonia is starting to get the best of him or not. He has refused to allow them to test or do xrays, his theory is "what's the point?" Hopefully we will get to a point where he is comfortable soon. I don't know if we can do that without heavy sedation at this point though. :(