I just got back from spending the last 16 days with my Dad. For the most part he was in fairly good humor. The last couple of days got rough. He complained about being in pain at night. I went to the Dr. who prescribed Oxycontin. It seemed to really bring Dad down. At least I am assuming it is the drug. Is anyone familiar with this drug? Is there maybe a better alternative?
It worries us so much. Dad has been having more choking spells from phlegm build up and we know it panics him. Some days are worse than others. Dr. prescribed a patch to help with the phlegm but we're afraid it will dry his mouth so that he chokes on his food. I'm scared he's going to want to stop eating for fear of choking. He is not sleeping well and gets so tired.
I got a call from the ALS Society - they want my Dad to go in for an assessment to see if they can help him. The city is a 3 1/2 hour car drive away. How do we get him there? He can't walk at all now, can hardly use his left hand/arm and hit his tailbone, causing a bruise that seems to have turned into a pressure sore. We've had a nurse from Home Care come in to check on it but it is taking forever to heal and it is very difficult for him to sit or lie for any length of time. Sometimes I feel as if I'm at my wit's end. My two sisters and I are looking after Dad at home as he is terrified he will have to stay in a hospital or personal care home. We love him so much but it is getting harder and harder to transfer him from bed to chair, find food that is safe for him to eat, etc. We are afraid we will hurt him as he has become so frail. His voice seems to be getting weaker.
Sorry for such a long post. Tired and worried...wondering if we're doing all we can....
JMH

Sorry to hear you are having such a hard time. Your Dad is very fortunate to have you and your sisters to care for him as long as you can. Is he on any thing to help him sleep? My hubby takes xanax .5mg ( the lowest dose available ) an hour before bedtime and it helps immensely. It is available in generic and inexpensive. Maybe you could ask his doctor about it over the phone. I know our doctors (both primary care and specialists) have been open to suggestions and if appropiate will usually call in a prescription immediately. When your Dad sleeps better it will also allow you to get better rest and help you to give him the best care you can. Hang in there. Boots.

Hi JMH: I am sorry to hear about your dad. He is very lucky to have you and your sister take care of him. My mom has been diagnosed with motorneuron disease with bulbar like symptoms. My brother has moved back home to be with her. I was wondering what the name of the patch that your dad is on for his phlegm. I am not sure if your father has a excessive saliva build up but we are dealing with that right now. Medications don't seem to really help.

I will keep you and your family in my prayers. Anne

Thanks for the advice about the xanax Boots. I'll look into it. Dad is currently taking 7.5 mg of Zoplicone to help him sleep but it doesn't seem to be helping. His doctor said that if he was in pain a sleeping aid won't help. I was just looking up some info. on the net.

I found this site: www.alsofmi.org/pdf/als5_Treatment.pdf (http://www.alsofmi.org/pdf/als5_Treatment.pdf)

It may be helpful as it lists a lot of different meds used to treat symptoms of ALS.

The medication they gave my dad is actually given for nausea (scopalomine patch). Hope I spelled it right. It supposedly dries up excess saliva. We were afraid to use it because someone in the forum mentioned that the upside of having excess saliva is that it may help the patient to swallow food better.

Not sure what to think now.

Take care.
JMH

My father is in a slighty further state. He's feeding on a tube.
But he recently spent a week in hospital trying to find a combination of drugs that would dry up his mouth. Too many choking episodes. The docs came up with a cocktail of drugs, including morphine to relax him a little. But still he has regular bad moments. Scary as hell.

A nurse taught my mother how to use a swab and a small toothbrush to clear collected saliva out of the back of his throat. God things are getting extreme. Getting beyond weakness and loss of speech.

Thanks for the info JMH. I take it the patch that your dad is on is probably the same that my mom is on now. It is used for motion sickness. It helps somewhat but not a great deal. Not sure that it helps with the swallowing because my mom has great difficulty swallowing. This is very much a very frustrating disease. God Bless. Anne

emjoi -

Do you have a suction machine for your dad? We have one for my husband and use yanquer suction catheters to suction out excess saliva - works like a charm.

emjoi -

Do you have a suction machine for your dad? We have one for my husband and use yanquer suction catheters to suction out excess saliva - works like a charm.

That's actually a pretty good idea. I'll suggest that to mum.

My ALS patient is also having excess saliva and mucas problems. We have just gotten a suction tube machine (don't know exact name of equipment), but her mucas is too thick for it. We must use the green sponges to swap her mouth out. Her Dr put on on, hyoscyamine (http://www.alsforums.com/definitions/hyoscyamine.html), which helped alot the first 2 weeks, but now is not helping much at all.

Yesterday, before I arrived at 9pm, her throat swelled "like a frogs" and got cherry red. She became very pale. Her family called hospice in. The RN thinks its that pill that is drying her out too much, which I find hard to believe. I'm not sure what it was at all, but I sense the end is coming.

I'll have to look up this patch you are mentioning.

emjoi -

Do you have a suction machine for your dad? We have one for my husband and use yanquer suction catheters to suction out excess saliva - works like a charm.

Will definately look into this for Dad. I'm due back at the end of this weekend. It sounds like the answer to a prayer. Is it uncomfortable for the patient? My dad has a very strong gag reflex....wondering how he'd deal with it. Am going to look it up to see if I can find it on the net. Thanks so much!
JMH

Hi there, I was surprised to see oxycontin as a drug prescribed for an ALS patient. I'm not a Doctor but I think you should look up the side effects. May be why your Dad is weaker and tired. My very best to you , Beebe

We used to use and over-the-counter motion sickness medication called Transderm-V to reduce saliva production. It's a patch that contains scopalomine. Our Neurologist suggested it and it worked.
T.

Hi there, I was surprised to see oxycontin as a drug prescribed for an ALS patient. I'm not a Doctor but I think you should look up the side effects. May be why your Dad is weaker and tired. My very best to you , Beebe

Jeez, this is so scary. I wondered about the side effects of oxycontin when I read them. The ALS society wants to see dad in the city but my sisters think the trip would be too difficult for him. The drugs that the GP gives are exactly why I think he should go. I think the ALS team would benefit him a lot more. Feels like I'm in a power struggle sometimes to get dad looked after properly and that is so sad. If anyone has any ideas on how to deal with conflicting opinions in care givers I could sure use some help. The situation is getting desperate.
JMH

I agree with you JMH. Most GP's have no idea what an ALS patient needs. I am my GP's first and only patient with ALS. I go to the clinic for meds because they see 30 patients in a day.That gives them a whole lot more input into what we are going through and what works. You tell the GP you have a pain and he gives you what he gives everyone else which may not be good for us. It's not his fault because this is a very complex disease and needs a specialist. Does your GP have the Physicians Manual for ALS Patients from the ALS Society? That would at least help him make some decisions. AL.

Thanks Al........am going to speak to Dad's GP this week. Will ask him about the manual.
I'm still trying to get dad to go see the ALS team at the Deer Lodge facility in Winnipeg. He's got a pressure sore on his tail bone and can't sit for the 3 1/2 hour drive if I CAN convince him. Think the GP would order up an ambulance with a comfy bed for the trip?
JMH

They have transfer services that do that in Ontario but not sure about Manitoba. I'd sure be checking it out though. Good luck. AL.

I love this forum. Al you are one of the good guys (and have a wealth of information for strugglers like me). I USED to be a scared little mouse that wouldn't ask a Dr. for anything in case I overstepped my bounds. ALS and my father's well-being have changed all that. I have learned so much in here. Thank you, thank you!
JMH

JMH, I noticed that you posted this a while ago. I hope you are still checking on it.

My mother had a terrible gag reflex. It was hard for her to do because her hands and arms were so weak, but she found the suction catheter a lot more tolerable if she managed it herself. If we could get the excess saliva before she tried to swallow it that helped too.

Also, she had gotten down to 78 lbs. Her tailbone was her most common complaint. Someone suggested sheep skin. We also tried those neck pillows, we put each side of it under her butt bones to get her off her tailbone. It wasn't a miracle cure, but we also used couch pillows under each hip when she laid in her bed. It wasn't until her last week that we found out they have a patch for just that sort of thing. It numbs the area and makes them more comfortable. Recommended use was on for 12 hours, off for 12. But hospice told us at that point we could put them on her as often as she liked as long as we left it off for at least an hour a day. I'm sorry I can't remember the name of the patch. I hope some of this helped.

God Bless You and Your Family
MERRY CHRISTMAS!!!

That's probably lidocaine patches you're referring to.

Hello
I am wondering if you have any Hospice close by to where you live? My Mom has ALS
and one night she scared us all. She couldn't breathe too good and kept coughing
up the plehm so we called Hospice and they came in with a packet of medicines
they had put in fridge for Mom for later and 1 of the pills was so help with the
salvia & plehm. It did wonders for her. Now we have it incase she gets salvia and
gets it bad. We give her a pill after breakfast everyday and it does seem to help
her alot. Check with Hospice in your area. They are wonderful people that could
help you and Your Dad without leaving the house. Hospice comes to our house.
Helps with Baths, we have a nurse and they offer so much.
Where are you from?
Let me know if you have Hospice close by.
Thanks and Prayers are with you and your family.
Diane

Hospice also comes to my Mom's nursing home. They send a CNA to give extra baths and a Chaplan who reads to her from the Bible and a social worker who coordinates everything with both Hospice and regular staff. On nuce days they wheel her outside if she feels strong enough.

Hi,

I'm terribly sorry to hear about your dad. It sounded so familiar to me that I had to post and let you know that my mom was on Dilaudid for pain (synthetic morphine) she was allergic to the real deal and Celexa.

I hope some of this post helps.

Your father is so lucky to have such a loving and supportive family.

God bless,

SoniaT
Vancouver, BC

My father is in a slighty further state. He's feeding on a tube.
But he recently spent a week in hospital trying to find a combination of drugs that would dry up his mouth. Too many choking episodes. The docs came up with a cocktail of drugs, including morphine to relax him a little. But still he has regular bad moments. Scary as hell.

A nurse taught my mother how to use a swab and a small toothbrush to clear collected saliva out of the back of his throat. God things are getting extreme. Getting beyond weakness and loss of speech.


Hi this is the first time I have ever been on a sight like this. I read your message and thought we are probably going through very similar things. My Dad is also feeding on a tube. They say it should help build up his strength. So far we have not seen any changes. The doctors told my Dad that the drugs which were drying up his salvia (Artaine) is the reason for all the choking. It was drying him out to much and the phlem was sticking to the dry patches in his throat and accumulating causing him to feel like there was a blockage. We have recently got a suction machine and nebulizer. I feel so helpless at this point and am in need of some support. Being so weak my Dad doesn't do anything anymore but sit on the couch. It takes so much begging and deal making just to get him to shower and change his clothes. My Dad is 58 and had to retire just recently from a job worked at for 30 years. He was the family rock always doing and helping everyone around him. To see him like this is more than I can bear sometimes. Thanks for listening.

Hi Suzaneb. I'm about your dad's age and more or less had to retire because of ALS but didn't know I had it when I retired. I used a drug for secretions that were supposed to dry them up but made them harder to cough up. I quit the drug and can now cough it up easier which to me is better. Thin phlegm is easier to cough up than thick stuff. It is very hard for your dad to feel worthwhile being in the state he is in. It is easy to just sit and wait to die. Dealing with ALS and any disease that basically gives you a death sentence is hard on a man or woman and you go through a lot of emotional turmoil. How long has your dad had symptoms and a diagnosis? A feeding tube is a good thing but it does take a while to build up weight that has been lost. There are a few different types of foods that are used. Is he using the most calories that are available? Welcome to the site and I hope we will be able to help. AL.

Thanks so much for your reply....the nearest hospice is 3 hours away from us. It's very difficult for dad to travel. I would love to be able to call a hospice and get such help. Everything is very scary. I'm wondering which pill your mom got to help with the phlegm. Dad is using a scopalomine patch right now....don't know if it's working or not. Unfortunately we don't even have a doctor who is familiar with ALS. It's very difficult - I've been relying on the good people in this forum for advice and information.
Take care.
JMH

Hi,
Well, just an update on the state of things.
My Dad is full time in Hospital now. In Bethlehem Private Hospital in Melbourne, Australia. They specialize in Neuro diseases in our city and know alot about ASL/MND.

Basically his Bulbar ALS got to the point where it's just too dangerous to be away from Medical care. (Thank god for Medical Insurance, BTW). So he lives in the hospital, coming home on Sundays. After some very bad episodes, he is utterly terrified of choking and I don't blame him. He gets frightened of choking, and the fear constricts his windpipe, and so he creates what he fears.
The sad thing is that now he has alot of Morphine, and so is usually drowsy and even when awake his eyes droop. Ahh daddy. I think I've hugged the guy more in the past month than in his entire previous life.

Thanks for the update. Having a family member go into a full time care facility is a hard decision to make but sometimes it is the best for all involved. Hope it works out for you all and keep us informed. AL.

emjoi-I am sorry about your Dad. The more hugs the better and even though he is on so much Morphine, believe me those hugs mean everything to him. Keep the strength.

God Bless,
Ellisa

Hi emjoi.

I just read your post. I'm sorry things are so hard for your dad and for you and the rest of your family now. I liked what you said about the hugging! I think you should hug him as much as you can he will feel your love through them and you will feel better doing it. I know it is such a simple gesture but I believe it carries a huge message.

Email me anytime sweetie,

Hugs (for you!)

SoniaT

Yeah, well we've spent our lives as macho (well, not that macho) guys... don't show too much emotion, a bit of detachment between us.
But now.... I don't want him to feel in his last days that I don't care. The guy deserves a bit of emotion. He deserves a few tears shed on his behalf. That doesn't mean becoming a gloomy weepy miseryguts around him.... that wont help him at all. But I want to remind him that he matters, he mattered, his life was worth something.

Hi,

I totally agree, his life should matter!

If you can't cry in front of him cry in the shower like I used to do. If he is the one crying (mom cried alllllll the time) just sit with him and hold his hand, or pat him on the shoulder, pass him the tissues, tell him it's okay to cry just let it out!

(I'm sorry I just suck at this I'm an only child, female, so when it comes to macho, not so macho guys stuff I'm sort of stuck, but I hope you might gather something from this weird post!)

Hugging is the perfect action!! :-D

Just spending quality time with him I think is saying I love you even if you don't say it out loud!

Take care of you too,

SoniaT
Burnaby, British Columbia, Canada

Hey everyone,
Not sure if I have read ALL posts, but so far haven't seen anything about this, and it helped my brother-in-law quite a bit. His situation was very extreme, and the suction machine just couldn't keep up with the massive amounts of saliva.
BOTOX! They gave him Botox injections in some (not all) of the salivary glands, and it really helped with the constant drooling. Still had to use the suction machine, but at least he didn't have to sit there with a roll of paper towels all day!! My husband, his brother, now has ALS, and I'm beginning to see some symptoms of excess phlegm, coughing, etc. And his speech is just a tiny bit slower and slurring a little. But at least he can still eat! I'm dreading the day that is taken from him, because he really enjoys good cooking, especially MY cooking (according to him, anyway).
Hang in there, and I'll keep y'all in my prayers. I hate this disease, and I'm so sorry you are having to go thru it, too.
God bless,
Pollyanna

Endgame.
After a bad bad week, yesterday my dad was put on continuous sedation.
Basically keeping him unconcious with drugs.
He was a bulbar sufferer and, despite all the horribleness of that, he had managed to keep use of his limbs... he could walk and type on his Lightwriter. But last week the muscle weakness finally caught up very dramatically, and his body just failed in so many ways.

More than anything, he didn't want to suffer, and that was what he was doing in that last week. So, this is for the best. He sleeps now, and soon it will be over.

Dear Emjoi, The pain of losing someone you love is so great there are no words I know to to speak. Just know that I am holding you and your family in my heart. My father died almost a month ago, and there are some of his last moments holding his hand and stroking his forehead, even when he could not speak, that I hang onto now. Holly

Dear Emjoi,

I'm terribly sorry to hear about your Dad. My Mom had the Bulbar type as well.

I have no elegant wise words to say to you to help you feel better because nothing is going to make you feel better now.

What I can say and what I believe is that even if your Dad is in continuous sedation, I believe he can still hear and sense what's going on around him to a certain degree. When my Mom was unconscious I would sit with her, hold her hand, stroke her face and hair and tell her how much I loved her, and what a good mother she had been to me. One day I got in the bed with her and held her. I felt she knew I was there, I don't know how I knew I just did.

She died with me holding her hand and my husband standing at her side. It was very peaceful. I thought I would be scared but I wasn't. I sat with her for awhile after she died and still spoke to her and told her I loved her.

My heart is breaking for you right now. Please know that you are not alone on this journey. I'm here to help, as I believe all the other kind people who come to this site are.

Feel what you need to feel now. Remember his love.

I'll be thinking of you and your Dad.

Many, many hugs for you and your family and your dear Dad.

Sonia

Hi hboyajian,

I just read that you lost your Dad almost a month ago. You poor dear. Please accept my deepest condolences.

I lost my Mom just over three years ago but am still grieving. She lived with me and my hubby and I took care of her for over two years. I too hold dear the moments of holding her hand and touching her face and talking to her even though I wasn't sure she could hear me.

Hugs for you,

Sonia

Sonia, hboyajian, thanks for your kind words. I'm so sorry you have gone thru this as well.

In the hospital is a small chapel, and in it is a book that people write little prayers.
And so many stories just like my own. People hoping their grandma or husband or friend at least find a peaceful end.

Anyway, I sat with pop for an hour this evening, holding his hand, chatting to mum about trivial things... deliberately picking on subjects that would interest him... the dog that he loved being taken on a walk etc. I think he could hear. I wish I knew for sure. Sometimes his hand would move in reaction. Damn I miss his voice. When he was healthy he could waffle on, on some silly subject and you'd be wishing he'd get the the Damn Point, but now I wish I could have that back so much.

Hello Emjoi, I am so sorry to hear of your impending loss of your father. I can only imagine how hard this is for you, but I also hope it is somewhat comforting to know that through sedation his suffering has been alleviated and soon he will suffer no more. I agree with others who've said that he can still hear you. I think it is beautiful that you sat with him and spoke of things he loved. God bless your dad and you. Sharon

I am not sure what stage of mucus build-up requires this, but my husband has recentlly started using what's called a "cough assist". It helps to draw the mucus far enough out that he is able, by stimulating his gag reflex, to vomit it out....or swallow it, whatever gets it out of his airway faster.....

Endgame.
More than anything, he didn't want to suffer, and that was what he was doing in that last week. So, this is for the best. He sleeps now, and soon it will be over.

Dear emjoi,
I am sorry that you and your family have to go through this. I know how hard all this is and I am thinking of you and praying. I lost my husband to ALS a year ago. I hope you will find some comfort in having so many people supporting you and understating what you are going through.
Sunny

Emjoi, I am so sorry for what all of you are going through. It sounds like your dad's situation unfolded much like my father's is (he is earlier on in the process). It helps me a lot to know how things are going at this point with you, as I know I will be in the same place much sooner than I would like.

Bless you, and thank you so much for sharing with all of us.

Dear Emjoi,

Just wondering how things are today? How are you holding up?

I liked what you said about sitting with your Dad and talking to him about things that mattered to him.

The part about him not being able to speak (I assuming this started a while back? As I know he is on continuous sedation.) Struck home with me. My mom lost her voice about 6 months before she died. To this day, more than 3 years later, I still miss the sound of her voice, the sound of her laugh and her complaining about our 6 cats taking up all the room on her bed!!

I think you are doing the right thing by sitting with him and just talking, holding his hand, just any type of physical contact along with the verbal contact I think is bigger than we know. But we will all know some day.

Please know that I am here for you, my shoulders are not too big, but they are ready and willing for you if you need them.

Please take care of you. My regards to your Mom and the rest of your family.

Sonia

Done.
My dad died at 8:15am this morning. I've just gotten back from the hospital. Gonna lie down on a bed and sleep a while.

Perhaps I should feel sadder, but it's more... "Well, finally its Over".
We lost the War, but at least the War is over.
I had more sadness watching him struggle than seeing him at rest.

And my mum can sleep and get out of that hospital and let go of all those worries.

So. That's it then.
Thanks for the kind words, everyone.

(Sonia, yes, his voice went around March 2006, He revealed his DX to me in June 2005, but had mysterious symptoms for a year before that.)

Dear Emjoi, I can completely relate to your exhaustion and need to sleep. I also was at the hospital for days before my father died, hardly getting a place to lie down. The sleep is healing, as grief can take a physical toll as well as emotional and mental. Do not be surprised if you can't remember simple things you need to do or have some other mental strains. I found that at first I couldn't feel, hardly anything, as my brain went completely numb and I felt like my body was just moving around automatically. You may experience something like this as well. Also, there was so much to be done regarding paperwork that I was helping my mother with...and so many people to call, and the obituary to write, and the memorial to arrange. It was only after all this that I have been able to feel little bits at a time. I think losing someone that close to you is so huge and overwhelming it cannot be felt all at once. Then, as you say there are other emotions, like the relief that he is not suffering now, and you have been feeling the pain of his suffering for so long. For me, I felt an irrational guilt that I had been unable to save my father. I am only just letting that go, and it still ambushes me at unexpected moments. Each of us experiences grief in our own way, sometimes different than what we thought it would be like or different than what other people expect. I think this is alright.

I am very sorry for your loss emjoi, may God bless your father and your family.

May he rest in peace.

Sincerely,

Paty
Husband's Caregiver
Baja California, Mexico

Good morning emjoi. I am so sorry to hear of the loss of your father but glad that his suffering is over. The thoughts and sympathies of all of us at the forums are with you and your family.
AL.

Emjoi -

Condolences on the loss of your father. Now you can all rest. My thoughts will be with you during the coming days.

Liz

Hi Emjoi,

I'm so sorry for the loss of your Dad. I believe he is at peace now. There will be some tough days ahead as I'm sure you know. Please try to get some rest, even if you can't sleep try to do something that comforts you. Please pass on my condolences to your Mom and the rest of your family.

Please come back and visit us when you are ready. I, for one, would like to know how you are doing.

You can email me anytime if you need to talk to someone. Don't be afraid to grieve.

You are a good person to have been with your Dad, caring for him, talking to him, loving him, etc.

Please remember when times get hard in the next few days...."remember to breathe".

It's been my pleasure to chat with you this last little while.

Take care of you,

Hugs for you and your family,

Sonia

Hello Emjoi,
I was sorry to hear about the loss of your Dad. I know both he and your Mom appreciate all you did for both of them. Give Mom an extra hug today from all of us on the forum, and one for yourself as well. I hope you continue to stay in touch as you grieve the loss of your Dad. Regards, Cindy

Hi JMH, Sorry about your Dad. He's at peace now and you were there for him. My thoughts and prayers are with you and your family. My Best to you , Beebe

Dear Emjoi,
I am so very sorry for your loss. Please accept my condolences. May you find comfort in knowing that your father is at peace and no longer suffering with this terrible disease.
Take care.
JMH

Thanks everyone for your kind words.
We layed him to rest yesterday. Speeches and hymns and then slowly getting drunk as we reminisced about him and caught up with relatives we hadn't seen in many years.

So it's done, it's done.

My daughter suddenly doesn't like sleeping without a light on. My mother and wife are both weepy at the slightest excuse. I'm back at work, but sometimes go hide in the men's room feeling like 15 tonnes are on my shoulders.
But it'll pass.

You step out the the church and cars are zooming by, people walking to and from whatever they normally do. Life keeps on going.

Emjoi, everybody grieves in their own way...there is no right or wrong way, it just is. And it takes time. It's very important, I think, that people give themselves all the time they need. Our beloved departed certainly deserve to be mourned. I saw once an illustration of what grief looks like -- a lightening bolt, but one that starts from the ground and reaches skyward. So you start to feel a little better (heading up), but then get down again, though not as low as the last low, then you feel a little better again, but again comes the down...though again not as low as the previous low...and so one. Please be very good to yourself in your grief. Sharon