mother is progressing fast

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janejane65

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I was wondering if anyone out there could help me. My mother seems to be progressing very fast with ALS. She is 69. She has limb onset. Her fatigue is so great that she can hardly get out of bed. She has opted not to use Bi-pap. She is on oxygen. I think that she does not want to prolong this disease. She describes this fatigue as different. She cannot seem to explain. She says there is an uderlying feeling of nausea. She also has a relentless cough that wears her down. The ALS has attacked her lungs. I feel very helpless. If anyone knows about this please share your experience with me. Thank you Janie
 

BethU

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Hi, Janie ... I'm so sorry your mother is so ill, and that you both are having to go through this terrible time.

I don't know if I am experiencing the same things as your mother (I have bulbar onset), but I do find that the exhaustion with ALS is very different from any tiredness I've experienced before. I haven't had any nausea, but since the start of my symptoms, it's been really hard to eat, because food repulsed me and I had no appetite, and lost a lot of weight. I hope your mother is not losing weight. It is very important for her to get as much nutrition as she can.

I think the most important thing right now is to improve your mother's comfort level. Talk to her doctor, and see if he/she can offer something (a prescription med) to counter her depression. Tell the doctor exactly what is happening, and how discouraged your mother is. If the doctor can help her feel better psychologically and emotionally, it may help her eat, and she will be a lot more comfortable physically, too.

Also, if she is less depressed, she may be more willing to consider bi-pap, and such equipment as the "cough assist," which could help deal with that relentless cough.

I'm praying that your mother will get the medical help that will carry her through this. And I'm praying for you, too, as I know this is as hard on you as it is on her.

BethU
 

Al

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Hi janie. Does your mom have a Bipap and just doesn't use it? If so and she is on Oxygen she is probably not getting rid of the C02 in her system. This would make her feel very tired and give her headaches. Using the Bipap would make her feel better. The cough could be phlegm build up or pneumonia or even post nasal drip. I get that and have a hard time coughing it up from the back of my throat. Decongestants seem to help.

AL.
 

JACKIEMAX

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I do have one suggestion about the coughing problem. Horace coughs a lot,
and it is in the back of his throat, and he has a very very difficult time getting
it to come up, but our pharmacist told us to give him coke, or any carbonated
drink, as that will help bring it up. Actually, it does help him more than decon-
gestions for him.

jackiemax
 

CindyM

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I am so sorry things are moving quickly for your Mom, Janie. Jackie's advice is right on target. It is so simple we keep forgetting it! And AL is correct. I have lung troubles too, and the nausea drives me nuts. Tell your Mom to use her BiPap more often, try "breath-stacking" and suck the lollipops they sell otc for pregnant Moms and cancer patients.

Breath stacking is simple: take in a breath, hold it, take another and hold, and take a third and hold it all for 5-7 seconds. I have learned to do this a few times whenever my fingers start to tingle. For me, the nausea comes along after my fingers have been tingling awhile, so in a way this exercise helps the nausea. I hope this helps a little. This is not an easy disease! :sad: Cindy
 

janejane65

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Thank you

I would like to thank all of you for your advise. Your kind words and advise are taken to heart. I have encourage my mom to get on here and talk with all of you. Set it up on her computer today. Hopefully she will see what a wonderful support system this is. Again thank you. My thoughts and prayers are with all of you.
Janie
 

missmissy

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I'm Janie's sister

Hi everyone and thanks so much for all of the help, prayers and information. I live about 3 hours away from our mom and dad and much of the support falls on Janie right now.

I have been lurking around here, reading and trying to learn as much as I can but I have so many questions - it's so frustrating!

Her ALS symptoms are coming fast and furious, and I think that Mom is still trying to adjust to the actual diagnosis AND the rapid progression. Right now, she (my mom) seems angry, depressed, bitter, sad, confused...I feel that she's given up.

That's what I want help with. How do we combat that? Can we fight this? Should we fight it? What are the boundaries?

What can we do to encourage her to want to do some things that will almost certainly improve her quality of life right now? She resists taking any nourishment through her feeding tube, she has refused the bi-pap and doesn't want anyone doing anything for her. Our dad is overwhelmed, we are overwhelmed. What's the "right" thing to do? What do we say? She has said she doesn't want to be a burden to anyone - but I want the burden, we all want it! We all want to care for her, make her comfortable, shower her with care and love - how can we convince her to let us do it?

Sorry for all of the questions, Janie can tell you - I'm the sister that needs a rule book and an encyclopedia! Thank all of you again for your help and care.
 

CindyM

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I'd start where she is, emotionally. The Bi-pap and nutrition can wait a few days until she comes around. I'd try spending some "quality time" with her- watching favorite movies, doing puzzles, reading out loud- whatever brings you both closer in a happier mood. Then listen for some cues that she is ready to hear how much she means to you.

This webiste offers a lot of advice- it is all heavily emotional stuff so prepare yourself if you decide to visit. http://www.hospicefoundation.org/newsroom/articles/://

I wish you all the best in this difficult task. Life is all about moving form one stage to another, I know, but this is one of the hardest transitions to make. Cordially, Cindy
 

Flowerpot

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Hi Janie

My Mum is not at this stage yet , but I wanted to send you bug hugs and kind thoughts from somone who is anticipating what you are going through.

Make sure you have support near to you , as you experience this with your Mum

kind regards

Flowerpot
 

janejane65

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Flower pot

Thank you. My thoughts are with you as well. I feel very lost though out all of this not what to do to help my mother as you must fees as well. Helpless is a better description. I think all we can do is take one day at a time and be thankful for that day.

Janie
 

sharonca

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Everyone told me the bi-pap would help and I was being stubborn and not using it. What a difference. I think it does help to get rid of the CO2. In the hospital they made me use oxygen and my energy level was way off. Since I have been home and using the b-pap at night I have been better every day energy-wise. Last night I didn't use the bi-pap since my problems with dry mouth were severe. Energy level today is way down.

If your mom would just try it for a couple of nights I think her attitude might turn around a bit. Depression makes us to funny things like giving up

Good luck to you.

Sharonca
 

JACKIEMAX

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hi - horace's dr. told me that when he chose to not eat, to not force it
because all you'd be doing is feeding the body - and when they are'ready
to go, they know to not eat, drink, or make any effort to fight this.

There is no cure for ALS, and the progression can be very rapid.
What people out there do not understand that it is not just the
patient who has ALS, but the family , esp. the caregiver, has it
too. I truly feel some days it is harder on me, than my husband.

I am at my wit's end right now.

jackiemax
 

thelma313

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To Janie and MissMissy

My thoughts are with you both. My sister and I will one day be in a similar situation. Our dad was diagnosed with ALS a month ago. For now he is okay although he has bulbar onset and his speech is very slurred. Also his lung capacity was at 50% and after getting a Bipap it has already improved.

Tell your mom about the people on this forum who are sharing first-hand experience and have reported feeling better with a Bipap. If she's willing to do oxygen why not Bipap?

Also, my dad was totally despondent for the first couple of weeks after the diagnosed and now he is on anti-depressants and there is already a huge improvement in his attitude and he is facing this head-on.

Anyway, from a fellow daughter facing this enormous challenge, I am sending positive thoughts to you both! I pray your mom's spirits improve!

Thelma
 

JACKIEMAX

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need some special prayers , friends

i called my husband's primary care physician's office today and asked if
he would come and see him here tonight. He has been here twice already
at night. And, no, doctors do not make house calls any longer, but this
particular doctor has a great deal of admiration and respect for my
husband, and offered to come when needed.

I asked him to come tonight because Horace is going through becoming
extrememly cold for a few minutes, then sweating and getting so hot for
awhile.. this goes back and forth all day some days. A hospice nurse just
called and told me it souned as if his body was trying to shut down and his
brain was not regulating his temperature in his body.

He also does not want to eat very much anymore, and his kidney output
is slowing down.

Does anyone out there think these things sound familiar? If so, please post
soon.

jackiemax
 

msde302

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Jackiemax-

When my mom was nearing the end of her battle, she stopped eating. It slowed down over the course of a couple of months. First, because it was difficult for her to chew and swallow (she elected no PEG). And later, because, like your husband's doctor said, they know when to stop. She would tell me that nothing sounded good to her. At first I was panicked. I would get irritated with her and we'd be grumpy with one another. And then the hospice nurse explained it to me and I felt like a bit of a jerk for pushing it.

The last couple of weeks of her life she ate very little: a couple of spoons of yogurt, some pop, a few sips of a latte, etc. And that gradually went to only liquid. I wish I'd been more aware of how quickly it would happen. For some reason (psychological probably) I was thinking she'd be with me longer. God, I miss her.

So, as hard as it is for those of us who care for our PALS, we sometimes have to surrender to life's course. I hope that you and your husband have lots of time together still. And no one needs to tell you to make the most of these days. You've been doing a heroic job.

Kaija
 
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