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Erika

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Joined
Sep 21, 2016
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175
Reason
CALS
Diagnosis
06/2016
Country
US
State
Arizona
City
Mesa
The nurse that came for the initial evaluation was super nice and explained how my mom would get all the equipment she was already using, plus what ever she needs to be comfortable including a low air loss mattress. I was so relived. She also said they have a team who specialize or have experience with ALS, and how there are several ways to help her with air hunger and to keep her comfortable in the end. Basically, that mom would be in great hands. Once shes admitted, a social worker will come and the medical equipment will be delivered within a day or two. Shell also have a Spanish speaking nurse and nurse assistant. Her neurologist will also continue to follow her medical care. A very informative first interview. One thing I forgot to ask was if her formula would be covered. Guess I can ask tomorrow.

I started this hospice process thinking it's the next best decision, from an insurance and financial point, and not because I thought it was the end. But in the last few days she seems to be on yet another decline and I wonder if we are closer to then end than we think.
*She has trouble swallowing (almost choked on dinner the other day)and speaking. It's harder to understand what she says.
*Phlem is becoming an issue and her saliva begins to pool on the corners of her mouth.
* She gets fatigued just from sitting up on her chair or speaking.
*She cries more often. We all do.
*Her "good" hand is almost gone and her head feels heavier every day.

We continue to encourage her to use the cough assist, bipap and "eat" through her PEG. Some days are better than others. She started taking nudexta 2-3 days ago for some of the crying and saliva build up. Could this be making her feel so tired and weak too?

On a happier note, two of her sisters are coming to visit next week, hope that lifts her spirits. Sooo much more going on. This is the short version.

My mamma... I know the end will come, I just don't want her to suffer.

Thinking of you all. ♡
-Erika
 

Manhattanite

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Joined
May 10, 2015
Messages
209
Reason
Lost a loved one
Diagnosis
05/2015
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US
State
NY
City
New York
It sounds like your hospice provider is competent to deal with ALS, which is a good thing! Our social worker told us that studies have shown that patients who are placed on hospice earlier tend to live longer. In our case, hospice has not slowed down the progress of the disease but it has definitely made a difference in our quality of life.
 

soonerwife

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Joined
Mar 16, 2016
Messages
1,565
Reason
Lost a loved one
Diagnosis
10/2015
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State
OK
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Cleveland
Sounds like a good move Erika. I have had two experiences with hospice and they have both been wonderful. Sorry to hear that mom is having so many problems.
 

affected

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Joined
Apr 26, 2013
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lala land
It sure sounds like this hospice service will be wonderful at meeting the needs of your mum and the family!
 

Erika

Distinguished member
Joined
Sep 21, 2016
Messages
175
Reason
CALS
Diagnosis
06/2016
Country
US
State
Arizona
City
Mesa
Manhattanite, Soonerwife and Tillie - yes, that's definitely our goal, quality and comfort. . Things went well yesterday. We already received a call from the weekend nurses this morning to check on her and see if we needed anything or had any questions. That was nice. We signed the DNR form. Personally, even though that's what has been done with every family member that has passed (they were left in peace when they quit breathing and no longer had a pulse), signing that form made it so official and.....like a reality check of what happening and what's to come. That was the only time mom broke down.

Her nurse and a social worker will be coming this week to talk about her care, sign advance directives, equipment needed and about the team she will have. Just hope they can talk the talk and walk the walk, and won't back track on what was agreed in regards to equipment. So far so good though.

Hope you are all having a restful weekend.
-Erika
 

soonerwife

Very helpful member
Joined
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Reason
Lost a loved one
Diagnosis
10/2015
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US
State
OK
City
Cleveland
I think that if you and her Dr are unwavering on what she needs, it will be fine. Some Hospices have tried to get away from providing the Trilogy but then have made it happen when they realize that is what is truly needed.

I dread the day we have to sign the DNR... Even though we know it is inevitable, it is one of the hardest things to do, I think.
 

Erika

Distinguished member
Joined
Sep 21, 2016
Messages
175
Reason
CALS
Diagnosis
06/2016
Country
US
State
Arizona
City
Mesa
So far so good. Her social worker was very nice and we should be getting her new bed and mattress this week. Advance directives were talked about and forms were signed. They were very understanding and compassionate when talking about these decisions and even reminded her that should she change her mind about a trace and/or vent we can always come our LT from hospice and be readmitted. They kept telling her they are there for her and to do what ever that can to kept her comfortable and stress free. I think we'll have the nurse come out every 3 weeks and see how it goes.

She did loose her ability to speak for a few hrs on saturday, that really got her thinking. Fortunately the ALSA is lending us a toby so she can play with it before she absolutely needs it and so she can stay in touch with loved ones online now that her neck and "good" hand are becoming weaker.
Her sisters came to visit for a week and they are so enjoying their time together. It's so nice seeing them "hang out" in her room like teenage girls checking their Facebook posts. My mom and sister had put aside some of the clothing she can no longer wear. One night they had a fashion show that went to 4 am!!! She's having more trouble eating and feeling fatigued. But she is also smiling more these days. And that is beautiful sight to see. :)
-Erika
 

affected

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Joined
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05/2013
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lala land
So many positives in the midst of a crap situation, your post really made me smile at how well your mum is being looked after. Well done you and everyone involved!
 

Narrowminded

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Joined
Apr 30, 2016
Messages
2,648
Reason
Lost a loved one
Diagnosis
07/2007
Country
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State
PA
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Pittsburgh
Erika - what a warm wonderful post. I'm thrilled that your mum is happy and that her sisters are keeping her upbeat like everything is normal. That is wonderful to read.

Hugs,

Sue
 

Staying strong

Active member
Joined
Nov 20, 2014
Messages
78
Reason
Lost a loved one
Diagnosis
5/2011
Country
US
State
ct
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danbury
Sounds like she is in the right place with the right people in place.. it should help take a little pressure off of you and your family.. sending good thoughts to All of You!
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,565
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
OK
City
Cleveland
So nice that she had that time with her sisters. It sounds like they had a blast!

I'm glad things are going well with hospice. Hopefully her bed and mattress will help her to be more comfortable.

You are doing a great job with your mom. I bet she is very thankful for you.
 
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