Struggling

[sanderson]

My practical mind is struggling with my emotional mind. We accomopanied my dad yesterday to a follow up appointment at the ALS clinic he attends. The main purpose was to review the most recent breathing assessments and his swallowing assessment so he could make a decsion about a PEG, ( this had been discussed before at other appointments). There had been some changes with his swallowing and while he is not having noticeable trouble, he is coughing more aftre meals and there has been sig, changes in his voice and speech as well as general decline in his mobilty, using a wheelchair pretty much all the time. The swallowing assesment did show weakening in his swallowing muscles and he is silently aspirating small amounts of liquids. his breathing has also declined since the last test. All this to say that if was going to consider a feeding tube, now would be a good time as he doesnt require it just yet and his lung capacity would support the procedure, . This has been on my dads mind since our last appointment. Aftre hearing all the test resulst and the pros of a feeding tube and discussing his concerns, he decided against having one. He very clearly articulated his feelings and his reasoning. While he enjoys our visist and the time that we are able to spend with him, he is not enjoying his life. he is dependant for pretty much all aspects of his daily avtivities. he is ready for this to be done. It makes me very sad and yet I understand where he is coming from. My dad has always been one to make things work, to find a away to make things happen, and now he has stopped doing this. I am sorry this is so long, I am just so sad right now.

 

[hopingforcure]

So sorry to hear you and your family are struggling, we can all understand completely. While I am a advocate of the feeding tube, it is a choice that everyone has to make. I guess your father is a guy who feels that he is not willing to give anymore to als, trust me we all get that. I can completely understand how you feel, not a good place for anyone. Wanted to just let you know we are here for you. Tough call always, one I wish never had to be made.

 

[sanderson]

Thank you hoping. It truly is dad's decsion and we do suport him in his choice , I just wish, as everyone here does I am sure, that the decsion never had to be made. I am at the silent ranting phase I think.This is not a fair disease for anyone and I am at the angry stage that anyone has to suffer this and make these decsions! My dad , while 84, soon to be 85, was before this disease struck a very indpendant, active senior. he was a square dancer, a traveler, a grampy who attended his grandchildrens hockey, football, and baseball games, as well as dance recitals and school plays. His social calendar was more full than mine. He nursed my mom through her cancer and enabled her to stay at home until just before her death. He always found a way to make things work. As a dad, he was supportive and caring, always in the audience at my events whenever he could, always there for me, visisting us wherever we may be, never farther away than a phone call. he gave us our independance, but we always knew he was there if we needed him.
I am just struggling with this as we go through this journey and I am sure I will be better in the morning aftre a good nights sleep Thanks for listening
Susan

 

[Northern Dancer]

What a wonderful dad you have.


ND

 

[helpinhand]

My heart breaks for you, but what a loving daughter you are to support your dad throgh this very hard decision. My thoughts and prayers are with you and your family.

 

[tdamess]

it is very hard to accept any part of this a.l.s. crap to accept your dad's wishes i understand but , know it break's your heart wishing you the best of my thought's

 

[joelc]

I am sorry for what you are all going through. I wish her would reconsider a feeding tube as it not a big deal at all and will give him renewed energy. The decision is definitely his though. I wish you well!

 

[Marjorie R. Wilcox]

Decisions are difficult to make to say the least. You must know you are both blessed for the love and life you've had together. It shouldn't have to end. I would hope he would consider the PEG, but it isn't easy for everyone. I know I am stern about my quality of life when it comes to what the doctor wants and I don't. God bless you and yours... and we hope for the best.

 

[sanderson]

Thank you everyone . Today is a new day and the sun is shining so that is good! Last night i found myself falling into the "its not fair" line of thinking and instead of reconnizing that its not fair and move on , I wallowed in those thoughts for awhile. Thank you for listening , and I wish everyone some sunshine in your life today
Susan

 

[MACDONR]

Your father sounds just like my mom was. She heard and read everything about the feeding tube, had an appointment w/ the doctor to discuss next steps - but in the end declined it. In her words -"if it was going to make me better I would get it - but it's not going to - so I don't want it". I couldn't argue that fact. My mom, like your dad was very independent. She was a widow at 40 and raised us 3 kids on her own. There was never another man in her life so she took on both roles of mother and father and did a great job at it. My mother was always on the go and for this disease to take all that away from her - she didn't want to continue. My thoughts are with you and your dad. Cherish all the moments you have with him.

 

[irismarie]

I think more than one of us here are facing this choice right now and more than one has recently made the choice. I have not heard anyone who made the choice to have a peg regret having done so. Ans as BARRY said recently, he would not be here without his.
It is SUCH a hard choice, but if one goes WITH it, one always hs the opportunity to change ones mind later. If one chooses NOT to go with it, that is it, no more chances to change your mind.
I am seeing the ALS specialist Monday and think I am going to be confronted with the same question. ..........
I love your father already.
Please hug him from us all

 

[sanderson]

Thank you iris, he is pretty special man. macdonr, thank you for sharing your mom's story,it helps to hear others experiences.
Susan

 

[hjkangel]

Hi Susan. I totally understand. My Dad was diagnosed 3/10 at age 74. He was VERY active. He was snowblowing in Jan and developed weakness in an arm, that never went away. He used to mountain bike, hike, row a racing shell etc. Last summer he was kyaking and swimming and taking long walks. He took his last steps yesterday and his legs collaped and the fire dept came (for the 3'rd time now, I think) b/c my 74 yo Mom can't get him up. He has no use of hands or arms either. He won't be walking again. Dad does not want a feeding tube or vent. He has been talking about stopping the fight. He can do nothing at all now. We got the dragon program for the computer for voice command but he doesn't have the energy or will to pursue 'training' it. My heart is broken, but I totally respect his decision not to undertake PEG & vent. His speech, swallowing and breathing are still reasonably gd, but he is terribly fatigued, weak, painfuly thin and hunched over due to lack of chest and arm muscle. I believe his time is short before he will decide to not carry on. We are suddenly now in a panic as Dad has taken his last walking step yesterday and Mom cannot move him alone. The ALS chapter is going to obtain a hoyer for us in a few days. I am scared. I need to be w/ them. I am a single Mom (w/ a fabulous man in my life). I have a 17 yo Dtr and two horses as well as a full time job, bills and a home to maintain. I live out of state (about a 40-45 min drive from Mom and Dad). I've been going up twice a wk-all day sat and one overnight during the wk. Now I really am needed all the time. What are we going to do? I have FMLA paperwork on file, but if I go on leave-no income. We're all scared and devastated and are not sure what to do now. Ins, as you are prob painfully aware, does not cover a hired caregiver so Cals can work etc. Not sure what to do about next clinic appt either. We don't have, nor can afford a wheelchair van. Thankfully my sig other is strong and he can help sometimes.

I'm so sorry for what you are going through. You are among friends here that totally 'get it'. This cruel disease has joined us all in solidarity as we try to get through each day, live and love & deal with this tragic affliction.

 

[ghii]

My husband had the feeding tube put in on Tuesday and it is so easy. No complication at all. I thought it would be very hard and painful. He had some pain the first two days and now takes to it easily. I am grateful for it. Before he had it, he complained about being hungry and unable to eat. Once he has the feeding tube, he stops complaining about being hungry. I thought I would have to make smoothies using vitamix and pump it in. He is given two boxes instead of Fibersource HN, I simply pump it in. It is so easy.


ghii

 

[Miss]

Glad to hear that about the feeding tube. We are heading to the gastroenterologist on Thursday. I think they are going to suggest that it is time.