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cooklo

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I'm new to the forum and a new caregiver for my mom who has ALS. I am hoping that this forum will be the place to get answers to my many questions. First, in hindsight, my mother probably has had ALS for quite some time now. She has been getting weaker and weaker the past few years but we did not know what it was, nor did her doctors (amazing). It wasn't until she started slurring (actually thought she was drinking more than usual) that we forced her to get more help. After 2 months the diagnosis was given. That was just in June and since then, her condition has deteriated so much. A feeding tube was placed a month ago since she failed miserably her swallow tests. Her breathing is horrible, she cannot clear her throat at all and gets into a panic until it clears.

My questions are these:
1. We have the cough assist machine (she hates it), but what else can we do to help clear her throat of the 'gerd'? This is a real problem for her.

2. Dry mouth.... this is also horrible for her... since they don't want her to swallow anything, she is sucking on ice chips, but nothing is solving the dryness and she is miserable about it...

3. I think she has dementia now. It comes and goes, but her confusion over the small things is alarming.

I'll stop here.... would love to start a conversation and get help. Thank you to all of you for being there.
 

katekath

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Hi, I'm rather new here too. My mum was diagnosed with ALS a few weeks ago, though she had been weak since mid last year. All her tests (MRI, EMG, blood tests) came back normal, until she was warded for respiratory failure recently and the MRI show signs of ALS. If I am not wrong, ALS does not have a specific diagnosis test, but it takes a lot of different tests (and time) to eliminate all other possibilities.

My mum has a trach, so we clear her phlegm and/or saliva via suction. Regarding dry mouth, I am not too sure what solution there is, since having too much saliva might aggravate her situation.

The people in this forum had been very helpful and I am sure others can/will provide more answers for you.
 

CindyM

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Hello to you both and welcome to the forum. There is a wealth of information around here from folks caring for MND patients or living with the disease, so I am confident we will be able to help.

For starters, some PALS report that swallowing small sips of Coke or other such sodas help cut through the phlegm. Hope this helps! Cindy
 

BethU

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Hi, Cooklo ... I am so sorry about your mom.

About her dry mouth. You say the neuros don't want her to swallow anything. Does this include saliva? Are they giving her meds to cut down on saliva? (I wear a patch to accomplish this, as my problem is excess saliva.) If they are not trying to keep her mouth dry on purpose, I find that sucking on a hard candy will get the saliva flowing and get rid of that nasty dry-mouth feel. It is very uncomfortable, I know.

Dementia can accompany ALS, in about 20% of the cases. This is much harder on the caregivers than on the patient. Mention this to her neuro. I don't think there is anything that can be done to stop it; but being as patient and gentle as you can with her during her confusion will help her a lot.

It is so hard to see someone you love going through this, but your support is everything to her right now. Any personality changes are beyond her control; remember, inside, she is the same loving mom she always was.

Take care.
 

cooklo

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CALS
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Pt. St. Lucie,
Thank you for the replies -

I appreciate your quick replies regarding my mom. I've moved in with my mom since I can work from hom. She has a 'significant other' but he is 83 and a bit stubborn so I have to dance around him and his ways a bit to care for her.

I'm worried about the coke part, she does has a feeding tube because they were worried she would get fluid in her lungs and get pneumonia (sp). So they really don't want her to swallow anything. I have caught her sneeking chocolate however, but have not said anything. She is surviving on Ensure plus 4 times a day and now weighs 98 lbs... incredible.

I will try some hard candy to put in her mount..maybe a lollypop to lick since I know she will try to swallow whatever I give her. She used to love Raspberry tea, so I froze some and made ice chips out of the tea... She doesn't like the taste of ANYTHING since they put the peg in. I'm amazed at how quickly the taste buds go to sleep.

I will keep you posted... I do want to ask another very difficult question. 2 of her doctors have told me mom only has 2 - 4 months to live since putting in the tube and her phlem is choking her.. How do I know when to call hospice? Shouldn't I call them now and they will determine if it is time ? I want to call, but her S/O is not on board... I don't care, I want to do what is best....
 

brendapals

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953
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PALS
Diagnosis
06/2008
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any
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Hey there Cooklo,

Maybe you could get some info from Hospice before you really need them? I know the Hospice in our town lets you visit the main office, gather info about what is available, ask questions of the social workers, etc. Kind of like a "test drive" without a committment?
As I'm sure you may already know, everyone has a unique "time frame" with ALS. Somewhere on here, it says we're all like snowflakes-no two exactly the same. Given what the doctors have said, maybe it would be good to do a "test drive" with hospice and see what they can offer. I know they have given a ton of support to many caregivers and patients.

Hope this helps a little bit,
feel free to rant anytime,
Keep the faith,
brenda
 

cooklo

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CALS
Country
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Thank you for the advice Brenda, I will call Hospice and do the 'test drive' as you suggest. I'm so reluctant to even mention the word Hospice in front of my mom, even though she knows this is a terminal illness. She feels that since she was recently diagnosed that she has years, but the doctors have not told her it would be months. I usually don't hold doctors to their word but my mom has gone down hill very quickly.

I'm keeping the faith though, my mom is a little thing, but a big big fighter... Now if I could get her significant other in line! :)
 

cooklo

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Oct 11, 2008
Messages
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Reason
CALS
Country
US
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Beth, the neuros are worried she will get ill if fluid gets in her lungs.. She has COPD and asthma on top of the ALS. Her speech and swallowing are no good at all. We can barely understand what she says and she continually chokes on her own saliva. This is very difficult to watch and I feel helpless when she is struggling to catch her breath. I cannot understand why there are not more options to assist her breathing or clearing her throat.

To see her struggle and panic with fear breaks your heart.. I have to find something to help her other than a ventilator.
 

cooklo

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Oct 11, 2008
Messages
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CALS
Country
US
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Florida
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Pt. St. Lucie,
Hi KateKath, thank you for your post. What was the determination to get a trach for your mom? I know they mentioned this to my mom, but she says 'NO WAY WILL THEY CUT MY THROAT'. Maybe if she continues to struggle
the way she is breathing she will change her mind.

Also, I don't know about the too much saliva, they haven't said that. Actually they haven't said much other than, get her papers in order. I've learned most from the ALS org which is wonderful. We have been giving her mucinex 3 times a day. I think more water into her tube would help also.
 

BethU

Extremely helpful member
Joined
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Cooklo ... I feel so bad for your mom and what both of you are going through. I hope she can get some relief with her breathing, and comfort. I'll be praying for you both ...

Hang in there ... and take care of yourself, too.
 

katekath

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CALS
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Hi cooklo,

My mum had respiratory failure and was warded into ICU. There, she was put on the ventilator and had a tube going down her throat to help her breath. The docs tried to wean her off the ventilator but was unsuccessful. Her carbon dioxide levels were too high when they switch it off or lower the settings. They also tried putting her on a mask, but that again was unsuccessful due to the same reason.

Because of the complications that might arise from having the tube down her throat and balloon to widen trachea (I was told the balloon might get stuck if tissues start forming around it), they advise a tracheotomy. My mum was very uncomfortable having the tubing down her throat through her mouth and thus agreed to have a trach. She mentioned she is breathing much better and need not exhaust too much energy to draw in oxygen.

I was told to give my mum sips of water now and then through her mouth. She cannot swallow well and is on tube feeding, but having that water makes her feel better with all the phlegm accumulating before suction.

Hope this helps.
 
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