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misschrissyg

Member
Joined
Nov 27, 2013
Messages
17
Reason
CALS
Diagnosis
09/2013
Country
CA
State
Ontario
City
Brantford
Hi there,
I wrote a thread a while ago asking for advice on moving home from Korea to be with my Mother who was just recently diagnosed with ALS.
I have since uprooted my life to be with her, and while it's been very difficult to adjust and be away from my significant other, I'm very happy and confident with my decision to be with her, as nobody else in my family is willing to help out.

On another note, my Mother has been having difficulties swallowing. I make her only soft food, but she still struggles at times. The doctors, nurses and speech therapist have all recommended a feeding tube. She is in denial and refuses to get one. I tell her that she doesn't need to use it everyday, it's just so we can ensure she is getting all of her nutrients. My Step Dad is also in denial, and I believe I might have to fight him on this one. My sister is already in a huge argument with him about this, and it's been really stressful and upsetting to my Mother.

How can I suggest a feeding tube to my Mother without really upsetting her? I'm trying to have the conversation with her when she is alone, so my Step Dad can't answer for her.
She was recently told by another (very rude) Doctor that she could starve herself to die faster. This upset all of us very much, and I want her to prove him wrong by getting the feeding tube so she is able to get all of the nutrients she requires.

Thank you
 
Don't know if it will help to convince her but I can say that for me it has reduced a lot of stress on several levels.
1. No longer have to worry about chocking on my food when I eat.
2. Don't have to decide what I want to eat versus what I feel like cooking.
2. No worries about aspirating my food and getting pneumonia from it.
3. Medicines are easier to take as I crush them and put them through the tube.
4. Any liquids medicines can be put through the tube, so if they taste bad it doesn't matter because I don't taste them anyway.
There are several other advantages to the tube but I'll let others expound on them
Ultimately though it has to be her decision.
 
I am glad you came back and are happy with the decision.
Is your mom planning to have a feeding tube eventually? If she has decided not then you would have to respect that. If she is in the I don't need it yet camp that is different. My sister delayed for too long. She had one finally and got pneumonia and almost died. She fortunately recovered and the feeding tube has been great. She has regained desperately needed pounds, she no longer has to struggle to swallow spending an hour or more to get minimal food exhausting herself and her caregivers. Having it when the doctors had recommended it would have spared so much suffering. I wish I had been able to find the magic words sooner to get her to have one. In her case the tipping point was that she was losing weight even though she tried so hard and was below what her neuro said was minimum acceptable weight
 
My pals had his feeding tube placed early in anticipation of down the road. Unfortunately down the road came the next week. He failed the swallowing test. He has not lost any weight and now has nutrients and meds given in the peg. This is your moms decision and you should respect that as hard as it may be. Maybe your sister can take your stepdad off for a few hours and you can have a one on one talk with your mom to find out what her wishes are.


Debbie
 
Thank you all.
While my Step Dad was at work this morning, I had a talk with my Mom regarding the feeding tube and her wishes. She asked me who I had been talking to. It seemed to give me a bit more credibility when I told her I had been talking to others who have been diagnosed with the disease or who are familiar with it. I also told her I've been doing some of my own reading, and it's safer to get it now versus later in an emergency situation. I also told her I'm concerned with her hydration ect.
I talked to her about how dalvin feels with his feeding tube (so thank you for those pointers). Thank you to everyone for the advice, it was all very helpful. She immediately said "Yes!".
She said she'd always wanted it, but was afraid. I will speak to my Step Dad about it tonight. I think she feels a lot more confident in things now that I'm here for her to speak to. This is just one of many conversations we need to have in the next couple of days or weeks as she is becoming very difficult to understand.
Thank you for giving me the courage to speak to her about it.
It went a lot better than I had anticipated. I admire her and all of you for being so brave.
 
While she can still drink, Sandy (my wife) is making me 3 kinds of drinkable nutrients which I try to get down at least twice a day, all blended/liquidified:

1. 28 oz. of whole chocolate milk with a banana and two tablespoons of either peanut butter or Nuetella = 700 cals
2. 16 oz. of her gazpacho soup, no cals, but plenty of fiber and other good stuff
3. 16 oz. fruit smoothie = 300 cals

so that gets 2,000 cals per day plus we try to supplement it with something else but usually choking fears keep me from trying

FWIW & kind regards,

Max

BTW, I am 62, I had to give up food in February, and my weight is now holding.
 
I am glad she decided to go for it! I believe it gave my Mom and us relief and she was able to live more comfortably for a longer period of time. It's a hard decision, but well worth it.
 
I recently had the feeding tubed placed, I realize now, it was a big mistake. In hindsight, I should have never gotten the feeding tube. I was in the doorway to death by starvation. 3 days without water and I would have been on my way. They would have given me morphine to keep me comfortable until it was done. Now it is the breathing that will be a problem, death by suffocation.

I can't talk and breathe at the same time
The process of death is natural, we tend to interfere with that process. We forget this life is temporary. I am sad, I GET to go on an early pass, while everyone I love, will have to stay. This is no life, not for me, I'm anxious for my next assignment!
 
Hello.My wife and I moved to Costa Rica in July 2013.She has had ALS for 3 years.3 weeks ago we had the feeding tube procedure.What a great difference in her it made.She got to a point where she would sleep 18+ hours a day and could not even drink her Ensure.We would be happy to invite you and your family to see for them self's how it works and that it is more convenient and better for the her.please write me direct @ [email protected] I would be more than happy to help.Take Care David
 
Oh LeeAnn, please don't look at it that way.

You still have the choice to say stop feeding and hydration, but just take morphine or any other palliative meds through the peg with minimal water. Or that these meds are to be injected if you prefer.

Whilst you now have peg you still have control of that choice to continue nutrition and hydration, or to say stop.

There are no 'right' decisions with this awful disease, just informed choices and each will make different choices. I am sure I would make some different choices to ones my husband has made, but that doesn't make his choices wrong, I support the choices he makes as his.

The peg is simple, and it can prolong a PALS life, but I think for rapid progression PALS it mostly can make the life they have left more comfortable.
 
Well said Tillie!
 
Sorry I have been absent for a few days!
I'm really sorry that you feel that way Leann. I do hope that you can enjoy your time that you do have with your friends and family.
Thank you to everyone for the advice. We had a consultation with the Doctor today regarding her feeding tube, and to see if she was strong enough to have the procedure. They are fairly confident that she will do just fine! However, it will be a few weeks until she can get the procedure. But, as of yet she is willing and wanting to get the feeding tube. I am so proud of her and really do admire her and all of your bravery!
 
My husband had his feeding tube put in last Nov. as his Pulmonary functions were down to 37% making the procedure increasingly difficult. He has not had to use it, and had a MicKey put in a couple of weeks ago, and we both really like it. I told him he looks like a blow up doll now. Gave him milk of magnesia through it tonight, so he didn't have to taste it.
Paulette
 
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