Restless and Anxious !

[Amy Perdomo]

Hi all - Hope everyone had a "good" Christmas, i dont know if the end is near for my mom but she has been very very anxious and scared when its time to go to bed she just doesnt want to lay down, i know she is out of breath when laid back put her hospital bed allows me to bring her up a little, anyways for the last 2 nights she has been "trying" to sleep on the recliner, i am constantly with her, but i get no sleep either, she doesnt want to wear the bipap, and she will have it half the night then yanks it off, she is soo sleepy during the whole day, all she does is dose off and when she breaths i can hear almost like a mechanical noise from her chest/throat, she was diagnosed in sept 2011, today she has a peg in and no longer speaks, she has no energy not even to open her eyes sometimes, i think this might be the beggining of the end, she is going to the ALS clinic on 01/22 but im afraid its going to be too late, does anyone know if theres something maybe that will help her breathing, she gets very scared when she sees that she is out of breath, she gets a look on her face that undescribable ....what a devastating disease this is. Healthy people dont know how we take for granted swallowing, talking, coughing just breathing....I HATE ALS ! i have been a mess, i have a 22 year old and a husband that have to put their relationship on hold to continuously be my moms caregiver....
i dont regret it at all, my mom has been the best mom / dad for all 4 of us, but this is a tuff road we have been put on....i will be praying for all of you and your families, please pray for mine.
Amy

 

[teee]

Hello Amy everything that you are going through I am also as per my post from yesterday,Worst Christmas Ever. My Mothers breathing is also very bad I can hear that same sound as you described hearing. The Hospice nurses and my father have been tilting her bed up all day and night as you have been doing to help her breathe easier. Also they give her liquid Morphine which is placed under her tongue this really helps her breathing as well I am not sure why as the doctor tried to explain it to me but whatever helps we will take it.

I also spend a lot of time at her house as depressing as it is there is no other way around it. My mother also got diagnosed last September however her symptoms started in February 2011 with difficulty swallowing. We went to 3 ALS clinic appointments and canceled our last one because there was no way we could of got her there plus personally I think they were pretty much of a waste. The last one we were out the Doctor gave her some hope and told her she was progressing slow and here we are 6 moths later and she is bed ridden and unable to speak and only eats yogurt and drinks some liquid. She has had some falls since then which lead her in the hospital and I believe this may have help progress her more quickly. She has no feeding tube or Bi Pap because she said she never would of want that.

All we can do is hang in there I feel your pain. I am almost to the point of praying that god takes her instead of asking him to heal her because her pain is so bad.

The good in all of this is that I was able to bring my mother to church with me for a few months which we never gone to church together my whole life. I really did not want to go but the first week we went I was able to bring her in her wheelchair and on the way home she asked me what are you doing next Sunday! She wanted to keep going. There was one Sunday that I called her and told her that I was not going and she started to cry [Which she does all the time another symptom of ALS] cause I backed out so I said OK I will be over and get you so as I was running late I needed to hurry to make the service and on my ride over to pick her up I got pulled over for running a stop sign I told her this after church and I was able to get a smile out of her so it was worth it....LOL. A few weeks ago I was going through her Emails and seen one that she replied to of a religious friend of hers and she told her that she accepted Jesus as her savior!

As you said ALS sucks. but she will soon be with the Lord. Keep Strong.

 

[Amy Perdomo]

tee - how old is your mom, my mom is 73 years old, she too has the crying/laughing episodes for that she takes Nuedexta, which has helped her alot, my mom has also accepted Jesus as her savior a while back ago, but she is unable to go to church anymore, she wont go out on the wheelchair. Does your mom doze off and on all day long, its like she doesnt have the strenght for anything....she was such a strong person..she lives with me so i am her caregiver, u mentioned she was on hospice ? is that like when they are on their final stages ?
i am a sack of nerves....dont feel bad for praying to God to take her before it gets any worse, i never thought i would say that, but today i pray God sends her home in her sleep so that she doesnt have to suffer anymore, we will one day be reunited with them again....
Amy

 

[Barbie]

amy- try having her use the bipap during the day instead of at night...she may get more use to it and be able to use it at night as well. also, you dont have to wait until clinic--perhaps the settings need to be adjusted. you can call the pulmo or resp. therapist and get them to adjust it ASAP. her needs may have changed. also, it is getting toward the end, is she on Hospice? they often give morphine to calm the patient and reduce the stress of "air hunger". you mom doesnt need to suffer--you cant stop ALS but you can do all that can be done to make them comfortable and transition in peace. you can also call hospice directly and request that they evaluate your mom, and call her doc and ask for a referral.

Don't wait for clinic--get on the phone today

 

[teee]

Amy my mom is 67 she takes Nuedexta as well. Our situation is so much alike. She is still at home with her husband my step father and he is 82 years old he is still her primary caregiver. But he is in no shape to be. Hospice was something that we looked into back in May or June it is great the nurse comes in 3 times a week all medications are covered through them. She has an emergency pack of medicine in the refrigerator for everything from the basic cold to vomiting to pain medication. Plus the aid comes daily and used to get her out of bed and in the tub or onto the chair over the tub to bath her. Since her condition has got worse the aid comes now and washes her in bed and changes her bed sheets and things like that. It is covered completely through medicare. You should look into this. Also back in August hospice notified the dept. of aging for us and they came out and evaluated her medical condition and now finally after 4 months we now have a caregiver there for 4 hours a day 6 days a week and she not only gives mom whatever she my need she also does whatever my step father needs such as cleaning and such.

Yes all day long she goes in and out of sleep the pain medication that she is on helps her sleep and somewhat eases her pain. She has no strength left and her poor little skinny legs are stiff as a wood. this is whats causing her the most pain today.

It is a shame to look at all the pics that I have on my phone that I took over the last few months and the progression that she is going through. At leaset your mother is not at the point of being bed ridden. Can she still eat and talk?

 

[Amy Perdomo]

wow, it breaks my heart , no she can not eat or drink, she is on the peg feeding, i do moisten her lips with a wet sponge and always have chapstick handy...i just spoke to the ppl that will be bringing in the cough vest tommorow, has anyone tried it before ? it supose to be a new thing, its a vest you wear it for 20 minutes twice a day and its suppose to vibrate and it should break up the phglem but now im not sure she will be able to cough it up on her ow, actually im almost certain she wont, lets see how that works...

 

[Amy Perdomo]

Barbie - thanks for your reply, actually i called her dr today to see if theres something se can take for that look of desperation when she feels short of breath, she gets so anxious and scared...would you know anything about the "vest" i guess this vest is suppose to alleviate all the weird noises i hear in her throat, i can hear the phlem she just cant cough it up, i bough her the hand held cough assist machine, that does nothing, plus i can not stick that long plastic tube down her throat, she gags and im scared i will hurt her throat.....God Please let this end...sooner that later....i dont want my mother (my best friend) to have to suffer through this....
thanks for hearing me out....
Amy

 

[laurel]

Amy I am thinking of you and saying prayers for your mother. Try to not panic when she is scared, and keep reassuring her no matter what. You need to get hospice involved now. No it doesn't necessarily mean that death is imminent--they can give you and your mom the support that is needed asap. They can help with the vest and other comfort measures. Keep us posted. Hugs to you.

Laurel

 

[vzandt]

Amy and Tee.....my prayers are with you both. And with your moms.

 

[notme]

HI

Lots with ALS and others with lung issues use cough vests...it should help.

As for the sensations of not breathing well...if she's not using a bipap either from choice or because she can't tolerate it...there are medications that can help ease the air hunger sensations she's having.

Is she on hospice care? Remember, hospice isn't just for those at death's door. They can aid her quite a bit if she's that uncomfortable.

There are also some masks available for the bipap that are so much nicer than the old style. I have a sleep weaver mask and I love it...doesn't bother me at all, and I'm one that can't stand to have anything over my face, but this one covers my nose and is really nice, it's a soft cloth material, not plastic at all. There should be some albums with pictures of them here somewhere.

I think I'd call the doc before the 1/22 appt and see if they can make some suggestions.