My Dad...

[Al]

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.

 

[JMH]

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

 

[sara06]

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!

 

[CNA]

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

 

[dianelynn17]

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

 

[CindyM]

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.

 

[SoniaT]

My Dad

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

 

[Suzanneb]

Just need some support

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.

 

[Al]

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.

 

[JMH]

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

 

[emjoi]

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.

 

[Al]

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.

 

[ellisa]

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

 

[SoniaT]

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

 

[emjoi]

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.