NEW my dad as ALS

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mrvaughan

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Thank you for updating us. I know it must be so hard for you to see your father like he is and you not knowing exactly what to do to help. Did he like seeing the grandkids? They are such a joy to my husband. Like Barbie said, if you could look after your dad so your mom can get out of the house, it might cheer her up. I too have gone through extremely frustrating and depressing times taking care of my husband. I hope your visit helps to cheer up both of them.
 

affected

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You will have to step carefully so that you can start to really help.

Your mum sounds exhausted and I can so empathise. Your dad sounds like he could use some in home assessments to get things more comfortable for him.

However, your mum may feel that someone is walking in and telling her she is doing it all wrong, so that's what I mean about stepping carefully.

Some great suggestions have already been made. Start small by asking what would help make things easier for HER, rather than suggesting things your dad may need. I feel that if you could give her a little time out, do a few little chores for her or something, then you could start to talk to her with empathy about her load and ask maybe if you could see if there are any services that could help.

Some CALS get so caught up in getting through each day, they don't have the time or energy to even try to get help especially if they don't know where to start looking.

I think that going there and seeing for yourself was the best thing you could have done.
 

simplycea

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Jan 21, 2014
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01/2010
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il
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great lakes
Dad update Day 1

The drive here was very strangely clear of traffic, and if there was traffic, the cars stayed at a great distance from me.
It was as if, God was keeping them far away.
There was many moments, I felt touched by The Lord and my eyes filled with tears.
Made it here without any trouble.
When I arrived to dad's, mom looked tired, and irritated but she did open the door for me to enter.
Dad seemed relieved to see me.

Dad sits in a computer chair. The chair gives dad, a tightening pain in both his legs. I can see why, because of water retention and blood unable to circulate back up. Rubbing seems to help.
He often slouches forward in his chair. I asked him why, he says that he gets tired sitting and slouching forwards seems to ease the stress.
His upper body twitches, more so around the right shoulders, chest and rib region. Mom made him a late lunch, 3pm, and he didn't eat very much. It was a plate of Jasmine rice, and chicken with bamboo. Mom says that he needs to eat more but he complains that although he can chew, swallow is very hard.

He wants to stay up with the grandkids and watch tv, (tv is the only form of entertainment) but mom insists that he tries to take a nap. He tells her that he will try, but she doesn't hear him and when she asks him again, he gets upset. Since I was there, I kindly mention that even I didn't him tell her, so I am sure mom didn't either. That notion seems to help calm dad down. (I can sense that is lack of strength has also impaired his speech, he talks in a very low voice). Before getting up with mom's help, and standing and slowly moving his frail body into the wheelchair, dad states that he misses a good sleep. Mom mistaken his comment for him missing her and for a moment, they embrace forehead to forehead.
(I tear up)
She picks him up under his armpits and he is wheeled to their bedroom.
The room is simple. It has a king size bed and a twin bed with a headboard and a foot board. Mom assist in picking dad up under his arm pits and slowly the two walk. Mom in front of dad, holding his arms, and dad trying his hardest to move each foot, one ahead of the other. She turns him so that the back of his knees are against the king size bed, and he sits down, in a plummeting motion. I stand behind his wheel chair and watch, but stay out of the way in fear of getting in the way. Mom lays him down, but I see that she is having a hard time getting him to lay on his left side facing the twin bed. She puts two pillows, but I see that the two pillows are too low for him. At this stage of ALS, dad needs to be propped up or in a bed that can incline and decline. He looks settled, lying in fetal position. He struggles with his head, unable to move it. Mom leaves the room to grab her cell phone and I move towards dad, sitting on the twin bed. I ask him to try to get some rest. I gently rub his right shoulder and caress the back of his arm. He says that his head is heavy. I ask if I can move it for him, but he declines. I tell him I am praying for him. I assume he is ok and stand up. Mom says she will also rest. I understand that as my que to leave, so I step out and mom shuts the door.

It is 4:30 and I am sitting here in the living room. I think I understand mom. Despite our differences, I can understand how she is feeling.
She cares for dad, she has been since he was diagnosis. She can't leave anywhere for too long because dad might need her. She is tired and irritated. She makes off the wall comments. I can tell she too is depressed and lonely. Seeing the quick embrace they shared, I can tell mom still loves dad. I mean, her husband who was once strong, the leader of the home, the sole provider, has become like a infant.
I can see the anger, the questions she has, (she has tried everything, spent so much money) to try and get dad well again, and her pain.

I am hoping that my presence will give mom some time to herself. I am hoping she will take it. I am also hoping dad will let me take care of him.

Dad update Day 2 AM
Last night was hard to sleep. Mom's house has no extra rooms and though there is a basement with a bed in it, the basement was extremely cold last night. My sister and her little family of 3 slept with us upstairs in the living room floor covered only by sheets and blankets. It was passed midnight when we all went down for the night. Sleep would have been good, but brother in law snored very loud. I was surprised everyone else in the living room was able to sleep, but I couldn't. It could have been that I was up thinking of my dad and praying for him, but snoring was so loud, I had to get up and seek for ear plugs. I found them on the bamboo table in the livingroom. My other sister brought them out earlier in night because the house was filled with children laughter and play.
Toss and turned I did.

Around 5 am I was awake to find mom standing in the living room. I motioned to let her know I was awake. She says that dad was up and wanted to sit with us in the living room. Brotherinlaw was still snoring and since I was bother by it, I suggested perhaps Dad sitting here with us, wouldn't be as fun as he thinks. So I pick up the computer chair and we bring it to their bedroom.

I find dad already in a sit up position. I sit the computer chair in the entrance.
Mom goes and picks dad up as she always does, under his armpits and assists him as he slowly steps one foot in front of the other over to his chair. He sits.

Mom is tired so I suggest she gets some rest and though I am also tired, I stay with dad. Not sure what I was expecting. I wanted to sleep, my mind was foggy, but I know that I can't just sleep and my dad unable to.
I can see why mom would do the same.
So I stay awake with dad, and from time to time, I adjust his pillows, give him a blanket, prop up his legs onto the bed, talk to him until the clear breaking of the dawn's light fills the room.

At one point during those hours, dad motions me to wake mom. He says that he wants to lay down. He wants me wake mom so that she can help him to lay down. knowing how tired she has been all these years. I deny him his request and suggest that I will help him lay down. I get up to clear foot of the bed where I was laying, and adjust his pillows to prop him up. I approach dad. At first dad seems ok with me helping, I even reach up under his armpits and then he withdraws. He says that he is afraid he will fall and hurt himself should I lose my footing.
He kindly and suggest in a convincingly way that he will just sit and wait until mom awakes. I see and I understand now.
I feel so helpless.

It is 840, we haven't had breakfast yet. My other sister just brought dad home some Mc D sausage patties and eggs with ice mocha. Seems to be the only thing dad likes.
 

simplycea

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At 4 pm today, Dad was rushed to the ER.

Doc just spoke to us, right now dad is sedated, he needs rest for his brain to recover. Doc says that he isn't 100% sure but that there seems to be little to no brain damage.

Dad seemed to have choked on sticky rice mom made earlier today. When the ambulance came by, his heart was pumping but he was not breathing. On the way, here his breathing stopped and they had to put in an air tube. When the got to the ER his heart also stopped. They worked on him for 15 min. He came back.
They did a CT scan of his brain, which looks to be good so far. they are monitoring his heart, his blood pressure and doing an ultrasound of his heart and then another CT scan to make sure there are no blood clots in his legs and arms.
Dad needs to be sedated because of the extent of what his body went through so that he can pass all his test which they will run tonight.
Doc says that tomorrow morning, if dad passes all his test, there is a good chance, the breathing tube will be removed. But right now, rest.

It is 1am now
I can't sleep, I am so tired. I am trying so hard to stay awake...I dozed off a few and then the machines would go off and send me into a panic.

Mom is at the base of the bed where dad is laying, she refuses to sit in a chair, but rather she is on her knees. Dad seems to be fighting it as much as he can when he is conscious. Initially, mom was not in favor of bringing dad to the hospital because they both fear of the worst and the machines, but mom seeing that the machines are keeping dad stable and alive, mom said to me that she wants dad to live, despite his wishes. I really hate to see my dad fight this...
The breathing tube is preventing him from talking, so we can't make out what he is saying...but it seems clear, he is fighting it.

When I see my dad fight it, I feel very confused and very upset. I don't understand. God help me to understand.
 

Barbie

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Cea, It is very important that you find out what your dad's wishes are. if he doesn't want the breathing tube or to be brought back if he chokes, then he needs to get a DNR form filled out and signed and witnessed. that is a "Do Not resuscitate". It sounds harsh, but it is essential for someone with a terminal illness to make that decision ahead of time. otherwise, the hospital will put a tube down his throat, and keep it in if it needs to breath. he could end up on a ventilator when he does not want to be on one. it is hard to get it turned off than on, and it in not respecting the patient's wishes if you do not have that conversation. I am sad to say, it is not about what you and your mom want it is about what he wants. I am very disturbed by this, considering that you said he did not want even oxygen or a non-invasive breathing system and then he chokes and you guys allow an invasive breathing tube.

You can get one of those forms from the hospital, and they should even have a social worker who will help to talk with your parents about the choices and what they mean. This is another thing that hospice does on their first visit and is so helpful. Have you talked to them about hospice yet? please don't put off the important conversations.
 

affected

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I'm glad Barbie has answered this way, as I totally agree.

Your father is the one who is living this disease and his wishes need to be clearly stated and then followed.

I'm so sorry for what is happening, I know it is distressing.
 

simplycea

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01/2010
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il
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Barbie, I completely understand what you are saying and I couldn't have agreed more with you, the only BIG problem was...
(Please try to understand) Dad never accepted it.
My mother used to be Catholic and then she went back to the old traditional ways. She says she can talk to spirits and the deceased ancestors. When dad initially got diagnosed about three years ago, they both didn't except it. She was told by her ceremonies and by reaching other shamans who are just like her, that another member of the family has hired someone to put a curse on dad. Since I am military, we don't live there. We visit and mom through the years has convinced both her and dad that the meds was not good, that he didn't need it and she spent a lot of money on traditional medicine, herbs and spiritual hearings. She even went as far as to get trained to speak to Buddha and raised up not just her own shrine for her beliefs, but also for buddha in hopes that dad would be heal. I have spoken to dad many times and he didn't believe he was sick and that he would get better. He barely ever went to any of his doctor visits. (I found out because when he landed in the ER).

By the time the Dr. came in to give him those two choices, you should have seen dad's look he had on his face. I have the whole conversation on video bc mom asked me to. He looked like he was hit with a ton of bricks, he couldn't believe he was going to die. Dying was brought up, but never looked at as an option. Dad honestly never believed he would die.
For the last year before he landed in the ER, mom has gone all over and seeking those who would heal him and no one has yet.
The many conversations mom and the family had with me, not me since dad didn't tell me anything, was that he didn't want to be hooked up to a machine. They believed that they couldn't go into the next life looking like they been torn apart or unrecognizable. They have seen the possible life of being on a ventilator on tv, and been told by others how shameful and humiliating it would be to live like that.
I love my family but I can't stand their traditions. This is why I came here to help me understand.

When Dad woke up from the ER, on ventilators, he was upset it seems. Doc gave him only two choices, live on a ventilator or go peacefully. They took the ventilator out bc they thought he was breathing mostly on his own, but when they did, his lungs were too weak to cough up the little flemm you and I can do just by clearing our throats, so in a matter of 2 min. dad was choking and they had to rush another breathing tube down his throat.
Doc said that without it, dad would die. He would need a breathing tube for the rest of his life. Doc was going to give dad as much time as he needed to decide...dad didn't want to be on tubes anymore and yet, dad didn't want to choose to die. It was painful to see him struggle like this...I wish he had not been brought back...but in that ER room, unless you had been there and were seeing what was going on in all our lives, you'd have wanted your dad back. We just didn't know he'd end up on a breathing machine. Dad never signed any DNR paper, no will, nothing.

Now being here a week, Dad is ok with it, he understands it helped him to live but I also see the drawbacks of it. He is often seen very depressed, but dad has been depressed now for the last year and a half, he never left the house. His only mode of transportation to and from his bed was a computer chair, and looking out the living room window.
Dad has decided to go with option one, and live with the help of a breathing machine and a feeding tube.

This morning mom with dad's permission will sign the paper work or consent form for it and he might actually go in today for the procedure or he might go tomorrow.
It is a very had place for all of us and for dad, that is a given. I wish that early on dad would have confided in me and spoke to me. I have been with dad now in the ICU for over a week now and I have seen it all, family feud, the cries, the drama, the pain, yet in the end we all love my dad and would want him to do what was best for him.

I am more of a level headed person, I have sat and talked with dad this far and I have shared with him in depth both decisions, and keep in mind that his family on his end also came to talk to him...whatever was said, dad has decided to live with help of a breathing machine.

Please don't be so harsh to judge until you have been here with us all these years and know what happens when a family absolutely believes in their traditions.
I am a christians, but I am also a realist. I knew dad had ALS and I knew what would happen to someone with ALS all the way to the end just from reading it alone. I am witnessing it and how horrible this disease is. Even if I had enemies, I would never wish this on them...NO ONE ever...
but they believe what they believe and I have been on board with fighting for the truth so that dad could accept what he has, and that is ALS. I have also mentioned to him many times since being here in ICU with him, is that if he chose to live on a ventilator, there would be no shame, life would be hard, he would have to forget the man he used to be and live for today and chose to be happy. It has always been a choice, but sometimes mom makes those choices for him...b.c he believes she has powers. BLAH BLAH baloney is what I think. And though I love her and respect her belief, she should not have been forcing that on dad, but then again, she really doesn't know any better when it came to the disease, but I can't say for sure. If you ask her now...she still believes that someone they upset the ancestors and this is why dad is sick. Their belief is very contradictory because the lies never stop from what they get when they reach out into the spirit world.

So not only was dad struck ill by a relative who hired a person to curse him to death, dad was also struck ill because dad upset the ancestors somehow during his 52 years here on earth...

See? this is why I have been on high stress alert...and fighting for my dad's right to know the truth. I am just the middle person who wants my dad to see the truth and know it, accept it or not, and able to make his own choices.
I honestly feel like I am on a losing team...and though it feels like that, I have been in constant prayer, and my faith keeps me very strong through all this.
 
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