My PALS passed last night

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CNA

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My patient passed away last night, apparently in her sleep. I was not with her. It appears to have been painless and quiet. I was so afraid her mucas would "choke" her.

It's a blessing, but Oh how I'm going to miss that very very special lady.

If anyother caregivers need support or answers that I may be able to provide, please just ask. I'll stay on the board, to help if I can, as you folks helped me.
 

Al

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So sorry to hear of your friend's passing. I do hope you will stay around. The only ones who really know about this disease are the ones that have lived with it. You I am sure will have many ideas that will help others. Our thoughts are with you. AL.
 

Barbie4

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Cna

Dear CNA

Sorry to hear of your patient. You will miss her. I am sure she and her family were thankful that you were there and so caring.
I am glad to hear that you will stay here. Al is right, we will need your experience and thoughtfullness.

My thoughts are with you and her today.

Barbie :(
 

trustinggod

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Dear CNA,
Thanks for the offer to help other caregivers. I am not a "real" caregiver I am a friend who helps my friend battle her ALS.

I stay with my friend (Linda) everyday while her husband is at work and help her get through the day. She has had ALS for a little more than 4 years and is totally dependent for EVERYTHING.

We believe her time to pass is near and struggle with giving up hope while still living each day to the fullest. Her husband asks daily "how much longer can this go on"?
It's very hard to watch her suffer and it's hard to care for someone who needs constant
attention.

I've read everything I could find over the past 4 years about ALS and have been able to prepare myself for each function that Linda has lost. I have not however been able to get answers to questions about knowing when the end is very near. They all say everyone is different and no two people with ALS experience it the same way.

Can you help us have a better understanding of the time frame?
 

Barbie4

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I am a friend too

Hello TrustinGod:

I am a friend too, and do not like to be called a caregiver. I too, go and stay with my friend (although not everyday) while her husband goes to work. she is not where your friend is. She was just diagnosed in March 06, but progressing quickly. I just love being with her and wish I could be there everyday.

Grampa Al had posted a difficult but good website on that subject and I tripped upon it. Here is the link, and I hope it helps you help your friend.

from one friend to another,

Barb :neutral:
 
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CNA

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I'm more than happy to help anyone try to prepare for the end. I hope I do not upset anyone by posting some of the things here I have typed.

In Diane's (my PALS) case, over the last 2 weeks, she became more irritable. I could notice such a change in her mental status; her always cheerful self that she presented to us outside caregivers was weakening. Her mother was there from Friday to Tuesday with her, and they had more a rough time lately. (It's easier to be short and mean to a family caregiver than it is to outside caregivers. There's another post in this forum where I commented just last week on this for someone.)

Just last week, she refused to get up one morning; said she "just wasn't ready to get up.". This was so unlike her; she had an internal alarm clock set for 6:30 am, to be up in her chair when her children came down to get ready for school. Never, since February when I started with her, did she not want up.

Her sleep was decreasing because of the pain. She would not take anything for pain, only 1 motrin in the AM. We begged her to take at least that, every 4 hours. She was convinced that any type of pain reliever would take away her mental clarity. Some nights, she wanted re-positioned every 1/2 hour. Once in a while, she'd manage to sleep for 2-3 hours in one position; those were good nights.

Her mucas increased 100% over the last 2-3 weeks. She was unable to swallow properly. It was becoming a real issue. We got a suction machine, thinking the green swabs to be so invasive. However, the mucas was too thick for the machine. She had began to take a pill to reduce the saliva and mucas. I believe that accounted for the thickness. So, we had to use the green swabs. And it was invasive. She couldn't swallow it down, and it was hard to breathe with us swabbing, trying to find and remove the mucas. It increased her anxiety, needless to say.

Her very limited speech ability became very affected, by the mucas. During the night, I would have to turn on the light to be able to watch her mouth as she tried to tell me what she needed. So many times, I simply could not understand her at all. Then I would go through the basics, "turn me", "clean my mouth", "my bowels moved", "I'm hot", "I'm cold", "are the kids in bed", so on and so on. This frustrated her, needless to say.

Her body temperature began to fluctuate and become uneven. One foot would be "burning up" and the other was so cold. She did suffer from hot flashes too (she was only 50). They would feed the anxiety, and the anxiety made the hot flashes worse; a real catch 22. But for the most part, she was always very cold. I would be surpised if she weighed maybe 70 lbs or so. She had zero fat on any part of her body.

Last night, her body temperature shot up, and she wanted all blankets off. (She always slept with 3 heavy fleece blankets on.) Early in the shift (9pm to 7a), a large amount of mucas was removed, then for the rest of the night, there was no mucas. She needed repositioned every 15 minutes. She had not drank any water nor eat anything all day. Her face was always very thin; it appeared to almost cave in by bed time, I was told.

Thankfully, she did fall asleep around 5am, and apparently passed approximately 5:30, in her sleep. It appeared to painless, there right at the end.
 

Barbie4

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?

Okay, I do not know why it is not working, but if you click on" Members list", and then look under "C" and then click on "CNA", and then in one of her posts, you can find the link that Al, had previously posted. I think it starts with "update.

sorry.

Barb
 

trustinggod

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Thank you

Dear CNA,
Thank you so much for all of the information you gave me. Almost all of the behaviors and symptoms have been present for some time. You mentioned that she was in pain.
I've had the understanding that there is not pain with ALS. So far Linda has not suffered with pain besides the residual pain from sore bottom from sitting too long in one position or uncomfortable because of hot/cold feet. Her neck is also always stiff and sore. What kind of pain did your patient have? I am so glad she died peacefully and in her sleep. So sorry for her children and family.
I still believe that God can heal my dear friend. I struggle to understand why He does not heal everyone who asks. But He is God and I know that He is good so I trust that His ways are above my ways and one day I'll understand. Linda shares my faith and looks forward to Heaven and running and eating again. Until that time I will stand by her every day doing my best to keep her comfortable and feeling loved.
Thank you again for generously sharing with me.
Jeanne
 

trustinggod

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Barb,
Nice to "meet" someone else who is helping a friend.
 

trustinggod

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Barb and CNA,
I almost forgot to say "Thank you" for the link you provided. Very thoughtful of you.
I appreciate it and will go to it now.
Jeanne
 

donnah

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CNA Please stay on board. A caregiver like you, gives a new caregiver like me inspiration. I'm sorry that your PAL passed. Please stay on and advise us..

Donna
 

CNA

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Jeanne, Barbie and Donna, thank you for the kind words. If I can give someone strength and /or information to keep helping their PALS, I know in my heart that my PALS (also a Diane) will be smiling at all of us.

She had told me that if she could survive this, she would dedicate herself to helping others learn about ALS and how to care for a PALS. So, maybe I'll just jump in and help her help others.

Jeanne, Diane's pain was from all the bony prominences she had. She was litterally skin and bones, no other way to say it. Her main source of pain was her tailbone. We used duo-derm patches and lidocaine patches, and alot of Calmoseptine. We would keep her on her sides mainly, going left to right.

With her being on her sides, her hips were very sore and painful; also her shoulders. An absolute must part of putting her on her side was to insure that the pillow behing her for re-positioning was from the waist up, so her tailbone had nothing behind it. And I always ensured that I "pulled" her shoulder forward a bit, so she was not lying directly on it; it's kinda hard to put in writing. But you all probably know what I mean....

Her neck was a constant source of pain. Unfortunately, most of it was from caregivers being too rough; forgetting that she could give herself no support and her neck must be cradled at all times. That's where the Bed Buddy (http://www.walgreens.com/store/product.jsp?CATID=100111&id=prod16156# was invaulable. Moshi pillows were really good too.

We used alot of fleece material too. We covered the pillow with it. Another big issue was her ear getting red and sore. Too many times, she was placed on her side with her ear "flopped over" and it became very sore. The fleece helped. We also had her lying on fleece. She also had the memory foam on top of the mattress.

We used the fleece on her chair too, to elevate one hip, or both, as she requsted. Also to just pad her everywhere we could. Those bony prominences were such a problem.

A special time for her and her sister, who came one week every month from Florida, was when she painted her toenails and fingernails. She would soak her feet, rub them, cream them, paint her nails, always with cute little stickers..... Anyhow, her fingernails would dig into her legs when you placed her arms crossed in her lap while in the chair. Again, a piece of fleece would solve that problem.

I also wanted to add here a link that Al provided on another forum here. http://www.living-with-als.org/Diane/ I visited this just quicky and am sooo impressed with the information provided on it. I intend to review all that information in the next day or two. Jeanne, this site has a bit on ALS and the mis-nomer that their is no pain.

Talk again soon! xo Karen
 

trustinggod

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Anyone else experience "bubbles"?

Has anyone had a problem with foamy bubbles within the silva in the mouth? These past two weeks have been very troublesome for my pals. I suction her several times a day to help with the secretions but the foam and bubbles are driving her nutty. It seems to be worse when she is sitting up. One of the nurses from hospice said it could be a sign of silent aspiration. She does not eat anything by mouth and only has tiny sips of water a few times a day.

Also, she wakes up feeling very nauseated in the morning. I think it has to do with her very low lung function. She has a bipap but won't use it.

Any information or suggestions would be appreciated.

Oh, one more thing, her husband had a melt down Monday night. He tries to keep everything normal and can't stand to see all the "hospital like machines" around the house. When he loses it she feels very down for days. They need to hire help for the nights but down really know where to turn. I am with her everyday from 8 in the am until 5 or 6 when her husband comes home from work. I also try to give husband a night off every other week or so. I know it's unreasonable for me to think that I could also help out at night but sometimes I feel like I should do it anyway. I am strong, healthy and willing to do whatever is necessary to help. I believe she has so little time left and I really wish that her husband could/would just spend his time being with her and talking while she still can.

Thanks for listening.
 

CNA

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I just came back from the church services. Oh, what to say. The amount of people who came was tremendous. She had touched so many lives through the years. Heaven is now a better place because she's there now.
 
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