NEW my dad as ALS

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simplycea

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I am new, just joined today. I had no where else to go. My dad was diagnose about 3 years ago and probably in the late stages of this horrible disease. Last night I got a call from my sister that dad was not breathing well and his hand and feet had some blueish discoloration to them. However, dad refuses to go to ER. He said that if he was going to die, he wanted to die at home.
Mom have not taken him to the ER bc, I don't know why. I live 3 hrs away and am not there often. I talked to his doctor who said that if he doesn't get oxygen he may have 6 months left and less without. His coughing is no longer a cough. Anyone know what is happening?:cry:
 

Clearwater AL

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This Forum segment is for those who have PLS. Check the Forum segments above this one..."Newly Diagnosed" more so for ALS. Sorry for what you are going through.

Post was moved by Moderators. Again, sorry for what you're going through.
 

Txgirl

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I am new, just joined today. I had no where else to go. My dad was diagnose about 3 years ago and probably in the late stages of this horrible disease. Last night I got a call from my sister that dad was not breathing well and his hand and feet had some blueish discoloration to them. However, dad refuses to go to ER. He said that if he was going to die, he wanted to die at home.
Mom have not taken him to the ER bc, I don't know why. I live 3 hrs away and am not there often. I talked to his doctor who said that if he doesn't get oxygen he may have 6 months left and less without. His coughing is no longer a cough. Anyone know what is happening?:cry:

Sorry about your dad. He is not getting enough oxygen. His diaphragm & other breathing muscles have deteriorated. This causes the lungs to not be able to take in 02 or breathe out. A non-invasive vent is what he needs but it is his decision to accept or deny it.
I use a non-invasive Trilogy vent with face mask to breathe.

The reason he can't cough is also due to the weak breathing muscles. There is a cough assist machine available for this problem. He definitely needs some oxygen to give him some relief.
 

Barbie

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Hi,

It sounds like your mom is probably following your dad's wishes. I completely understand not wanting to go to the hospital...if he feels the end is near he wants to be at home and who can blame him.

however, she should call in hospice so they can help him with comfort. He is not getting enough oxygen. you should make the trip home to see him and visit your mom. they both need you now.
 

affected

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Hi, So sorry about your dad's diagnosis and the progression.

It may be that he has had enough and I can understand his fears of going into an ER. The generally do not understand this disease and the special needs when caring for a PALS.

You mother and he are living this every single day, I'm sorry you don't get to see him often, but living it every day is almost impossible to describe to someone who hasn't done this.

There are hard choices to make and your father can only really make them and your mother honour his choices. That's the situation I am in with my husband.

I think you should see if you can visit and really try to sit down and listen to where they are both at, and see if you can offer them some support whilst respecting their choices. If you can get yourself to that position the whole journey for all of you will be more peaceful and you will have those memories.

I truly wish you all peace, this is one tough path no matter which side of it all we are on.
 

simplycea

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Where would I go to post informational help and advice from those who are caring for PALS and how they are feeling? I need to understand what my mom is feeling as she is taking care of my dad who has ALS
 

ottawa girl

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Well - you've had an answer from a PALS, and two CALS - one with almost 7 years experience.

When's the last time you had a face to face, heart to heart talk with your Mom? Do you think there's something sinister going on? Your Dad and Mom, I suspect, are making decisions together. Tough decisions. Life and death decisions.

It's only a three hour trip. Truly, that's the only place you can go to get the actual answers to your questions.

Get goin' - time's a wastin'
 

simplycea

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I wish I could post the text message my sister and I had.
 

ottawa girl

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Please take this in the spirit it is given -

I would hurry home. From what I know of ALS - breathing problems can get worse overnight. Very worse.
 

simplycea

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Here, I will try my best to explain what is going on without the pictures.
A little background in my history:
I grew up abused by my parents, moved away, married to a man at 15, he abused me and then I left him 8 yrs later. The night my dad and I FaceTime, I saw the same look on his face I had all those years when I was crying and asking for help, and never utter a word. He was having a hard time breathing and refusing to go to the ER. I called and FaceTime him and he told me he didn't want to go and look away in tears. I was very worried for him.

I began reaching out to my dad's brother who lived in upper Wi. to see if he could convince my mom to take my dad. He couldn't because when he called no one at the house would pick up the phones. I became worried so the next morning as soon as I woke up, I called my dad's doc and got the nurse to return my call. She was told everything : my dad refusing care, having a hard time breathing, and doesn't want hospice. She said that since my dad has home health care, (which someone in the family is being paid to care for my dad) that perhaps home health care representative can order oxygen tank and a bed for my dad, hopefully can be covered by medicaid. I spoke to the nurse later that same day and she told me that nothing can be done until she speaks to the home healthcare lady, and have her visit my dad at home and measure his air. Since I wanted to know what will happen, the doc said that with air, he can live up to 6 months, and without, less. So I am trying to get my dad oxygen and hospice but the family members at home are denying him that.

I chatted with my sister last night and she said that mom was saying all these horrible things about my dad. How if she had a job, she would just put him in a home, it is because of him that she can't go anywhere and do anything and that she was asking questions bout my dad's 401k. I have seen my mom care for my dad, feed him, wash him but she isn't kind about it.

Then it dawn on me…I think my dad is afraid of my mom. If I am 33 years old and she isn't hesitant to hit me for speaking something she dislikes, i wonder if she hits my dad or beats him…just conjectures…but why on earth would anyone deny care? He has two young sons, my brothers that he loves and would want to live to see. I can't imagine him denying care or help, unless he felt like he was such a burden. Dying would be best.
 

simplycea

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I am going up tomorrow. I have four kids, and hubby is at work, the older two are in school and I have two younger one who are at home with me. I have arranged a dr. appt on Monday for him to see his family doc. and be there to make sure he gets the right attention and care he needs….
 

Barbie

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I think the best thing you can do is get home and fast. you and your sister need to intervene and find out what your dad really wants. Mom could just be blowing off steam and venting because caregiving is incredibly draining and hard, or you could be right she could be abusing your dad. He could also be depressed, or just emotionally upset by ALS and seeing you and thinking about his own death.


if mom is mistreating dad--you must be prepared to step in immediately. I don't know a lot about it, but I would guess calling the state and reporting your mom and removing him from the home. he will need full time care and you will be responsible for that.

no matter which way this goes, ALS is relentless and ends in death. it is a family disease, not just the person affected and everyone suffers in their own way. I really wish you luck Cea and hope nothing sinister is going on.

please keep us informed. a lot of people here will be able to give you good advice.
 

mrvaughan

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I wonder how this all turned out. I sit and think of the times that my husband has told people that I am holding him against his will, that I haven't fed him for 4 days, etc. It is so hard unless you are there for a while to see what is actually going on. For years, I told my coworkers that somehow I would end up in jail. ie/ my husband refused to wear a seatbelt, but I had nightmares that I would be driving, we would be in an accident and he would be injured or killed. My nightmare went on to have me on the news in a mug shot saying that I was a wife that neglected a disabled husband. AARRRRGH
I hope all is well and that if your mother is taking care of your father okay, that you understand that people make life decisions, and that it is the quality of life that they are willing to live with or not live with. For your father, he may not want to be on a ventilator or a feeding tube and prolong his life that way. Many, many, many well meaning people give me advice, but they are not living what we are living, and they of course can't know all of the conversation or experience that has gone into making what decisions we do.
If all is not well, and your mother is abusing, get specifics, take pictures if possible and take action. Good luck.
Mary
 

simplycea

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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.

I
 

Barbie

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sounds like a good visit--are your fears of you mom abusing your dad at ease now? ALS is a hard disease on both the patient and the caregiver. some things you could do for your parents is clean the house, do the laundry, cooks some dinners and freeze them go shopping for your mom. Even better if you feel comfortable is stay with your dad for the afternoon and let mom get out to get her hair done or go shopping. Perhaps you need to bring up hospice with them. that will give her some help and help him with his breathing. Hospice is no cost, and about making a patient comfortable . you do not have to be on your deathbed to get them to start coming in. they will come out to the house for a consultation and tell you about all their services.

You sound like a good daughter. good luck with everything.
 
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