When for hospice

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daughter2

Member
Joined
Nov 7, 2008
Messages
23
Reason
Loved one DX
Diagnosis
10/2008
Country
US
State
pa
City
malvern
I am wondering about the end for my mom...she is not opting for mechanical vent. Her breathing #'s steadily decline each 3 month clinic visit, they were 84, 63 and 45. Her next appt. is later this month. If the #'s are in the 20's does that mean she will only be able to survive another few months?
 
The only one who can answer that is your mom's neurologist ... and he/she can't really do more than an educated guess. Sometimes people plateau. I did ... my FVC was in the 30s, then went back up to 45 at the next clinic, then 40 at the last clinic.

Best thing to do is keep hoping the progression will slow, and do all the right things for her. Reduce stress, keep her weight up, pray ... and be there for her.
 
daughter2, is your mom still somewhat mobile or is she bed-bound? I agree with Beth, even a neurologist can only give you an educated guess. I know the not knowing is hard. I truly sympathize with your situation.

Beth, that is hopeful. I didn't know that an FVC # could go up that much. That's great!
 
Hi Daughter 2,

I am a daughter #2 too! I have the same questions about my Mom. Her numbers have gone down dramatically and it is making all of us very nervous. We are going to the new pulmonologist next week and I am hoping for some info from him about how to better to guage her progress and prognosis. I will pass along what I learn. Like your mom, so far my mom has said she does not want to be ventilated.

I know it is really hard not to know what the future holds. Know that you are not alone in your questions and concern.

It is great to hear from PALS like Beth that numbers can go up. It is not just a one way street!
 
Hello Daughters,

I just wanted to say that if your mom's seem to be showing the slightest bit of struggle in their breathing, please call in hospice. I feel that we waited a bit too long for this with my sweet momma. She was having what she felt were " panic attacks" which really were " air hunger", her diaphragm was no longer doing it's job. She was using her stomach muscles to breathe. For a few days I was administering morphine per her neurologist, and the whole thing made me very nervous. It was such a nice relief to have the hospice nurse take over that for me. It was so nerve wracking trying to manage her comfort, as well as be there with her as her daughter. Hospice are angels, please take advantage of that service. Mom was only on hospice for two days and then she passed. Wish I had more quality time with her in the end.

Love,
Holly
 
Wow...THANK YOU ALL for responding. I will be sure to ask more questions at the next clinic and was surprised to learn that levels can change to HIGHER. She is bedridden and has had some anxiety about breathing, we hope to get her Ativan or the like. I am so grateful for the support here...again Thank you. Enjoy today.
Barbara
 
Barbara, my dad is bedridden too although some days he feels strong enough to be lifted out of the bed to spend the day in his riser recliner. Lately he stays in bed and we have to give him ativan for his anxiety. This morning was rough. He had a terrible night's sleep and we just could not get the best seal on his bipap mask. I highly recommend you get the ativan. It sounds like my dad and your mom are at similar stages. My dad was diagnosed on August 18th 2008 and he has definitely had some ups and downs. A couple of weeks before Christmas, he was doing so badly we didn't think he'd make it to the holidays but he made a surprising rebound and had 2 great weeks before this latest decline.

I hope you enjoy the day too. Feel free to ask anything!
Rosella
 
Over two years ago my FCV was 60%, then this past month when they tested me it was 70%. So, yes it can change.
One thing that helped me with the Bi-pap was going from a face mask to what they call nose pillows. The face mask always leaked, but the nose pillows are very comfortable and work great.

ALS_KILLS :: nosepillows.jpg picture by ShakeyMarble - Photobucket
 
daughter2,
You have received some good input here. I will say that Dad's FVC fluctuated due to not getting a good seal for the test itself. It may not hurt, if your doc is agreeable to get a consult from Hospice to better understand what they have to offer and how they would propose helping your Mom. Hope you are able to get answers to your questions from the doc.
 
Holly,
Thank you for your input. I too have bulbar onset (PLS). After almost 5 years, it has now moved to my limbs. I was concerned as to when to call in hospice. My breathing is still good, but my swallowing has been bad for some time. I will not get a PEG or Vent, so will need the help of hospice when the breathing is affected.

Judy



Hello Daughters,

I just wanted to say that if your mom's seem to be showing the slightest bit of struggle in their breathing, please call in hospice. I feel that we waited a bit too long for this with my sweet momma. She was having what she felt were " panic attacks" which really were " air hunger", her diaphragm was no longer doing it's job. She was using her stomach muscles to breathe. For a few days I was administering morphine per her neurologist, and the whole thing made me very nervous. It was such a nice relief to have the hospice nurse take over that for me. It was so nerve wracking trying to manage her comfort, as well as be there with her as her daughter. Hospice are angels, please take advantage of that service. Mom was only on hospice for two days and then she passed. Wish I had more quality time with her in the end.

Love,
Holly
 
Hi! During our most recent visit, PALS breathing was 20%. The Dr. was somewhat somber with us but did not declare doom. He did not schedule us for monthly visits, which I understand he does when he suspects quick decline. Hubs in on non-invasive vent with pillows when he sleeps. He gets through days well in his electric wheelchair without ventilation. Hope this helps!
 
thank you for your honest info. i will be thinking of hubs.
 
How is everyone?
 
Well. thanks again for all input...her new # is 19. We figured it would be low. I also heard from the respiratory therapist that a person can live for many many months with this low #. At least we got her an antianxiety med. for when she feels a struggle. Hope everyone will have a good day today...or at least a smile or two.
Barbara
 
How is everyone?

Hi...i love your flying monkey thing...you must be a fun person!
ps. the monkeys scared the crap out of me growing up! I'd be happy to unleash them and hang out with them if it would help anyone with this disease.
 
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