Status
Not open for further replies.

pscheffel

Distinguished member
Joined
Apr 13, 2012
Messages
146
Reason
Lost a loved one
Diagnosis
12/2011
Country
US
State
Tx
City
NB
I am debating on this. I know there are pros and cons. Is it too soon? Just found out yesterday my Mom does not qualify for Medicaid assistance, therefore, no home health assistance. I am still having to work full time and have used all my FMLA when I had my 6 month old. My Mom can no longer swallow and us receiving her nutrition via PEG. She has refused using the BiPap from the beginning. Fortunately is still pretty mobile. She makes noises though, like hmmmmm noises. I ask her why and she shrugs. She also has FTD, which has caused confusion and difficulty with communication even more so... I know her condition is ever changing, so hospice will more than likely be authorized, but I'm still not sure. She already had DNR and had very strong feelings of not being kept alive via machines. She agreed to the PEG in Feb, when she was still cognitively good. Just want some input from you guys..
 
Do you have any other means for daily care for her? Dad? friends? church group? Siblings? Hospice doesnt stay with the person, only gives short visits once a day and not even every day.
 
I am in the same boat as you as far as hospice goes. Trying to figure it out?!

As far as the noise your mom is making, is it only when she exhales? My husband does the same thing, usually when he is tired or sleeping. Sometimes after a choking eppisode. The Dr. told me it is because of the effort it takes to exhale. Kind of like someone with asthma, when they are having trouble breathing. It is the bodies way and there is nothing that can be done for it. My husband has gotten much better since he started using the bi-pap. It really seems to help with breathing not just at night, but during the day when he is not using it, he seems to be having less trouble. It has helped with fatigue so much that he hardly ever naps during the day anymore. In general, it makes him feel better. I hope you can relay some of this to your mom so she will consider using the bi-pap. It helps with comfort and quality of life.
 
Moderated! Ugh, hope it shows up soon. Take care.
 
I will ask her to use the BiPap again. We have friends and family, but it's almost like no one wants to come see her. It's depressing or out if their way. I don't know.
 
I'm really concerned for her more. She is using her finger to wipe the saliva out of the back of her mouth. And she uses a rag to wipe around her mouth. The nurse comes twice a week and said if we do not keep her mouth clean, we may run into pneumonia troubles down the road. She did hear a little bit of stuff in one of her upper lungs, but nothing alarming.
 
Call the various hospice agencies in your area. Find out what each one is willing to offer service-wise. Also find out what the procedure is for going on/off hospice and then on again especially if you need equipment. Another good place to get a recommendation about the hospice agencies in your area, is from an elderly/disability law attorney - he/she will know which agency is the best to work with.

You might want to check with your HR dept and see if there's a way to take more time off or what they will allow. some places allow employees to donate accummulated time to another employee - doesn't hurt to ask.
 
Dang-I am sorry. We are on hospice, and they are great but you can not rely on them for home health care. We get 3 baths a week and a nurse visit. I think They may kick in more at the very end, but your mom doesn't sound there yet.

It sucks that "friends" cant be there when really needed...but I can relate. Maybe you could send out a blanket email to everyone and address your concern and need. ask for them to committ to a 3 hr shift with your mom (their friend) once a week. maybe some will step up. When my husband first got sick and could not drive any longer I had a daughter who was in competitive gymnastics and had to get to practice from school 4 days a week. I could not do it with everything else going on. so I sent out an email and I got 2 friends who volunteered to do it for me for the whole school year. I was so thankful, and one of them was really not even a close friend (but truer than many!). I have also heard of a website I think is called helping hands (someone will know) where you list your needs and invite people you know to volunteer. So maybe someone who it uncomfortable seeing your mom can maybe grocery shop or do laundry.
 
I just wanted to add that I have recently become a hospice volunteer and have seen how
much it has helped. All that is needed is a script from her doctor for hospice and the
services that are available are wonderful. In my area that would include a nurse, an aide
several days a week, and volunteer. Also, and if wanted, music therapy and spiritual counseling,
if you choose. I know from my experience that many families wish that they had called sooner.
My recommendation would be to ask her doctor. I am also so sorry that you are dealing with this,
you are such a great daughter!
 
I'm really concerned for her more. She is using her finger to wipe the saliva out of the back of her mouth. And she uses a rag to wipe around her mouth. The nurse comes twice a week and said if we do not keep her mouth clean, we may run into pneumonia troubles down the road. She did hear a little bit of stuff in one of her upper lungs, but nothing alarming.

Does she have a suction machine? She could use it to remove all the saliva and phlegm that is difficult to swallow. It is a very valuable piece of equipment.
 
Oral hygiene is very important. A lot can happen because of an unclean mouth. It's difficult but mostly doable.
 
Barbie, Thank you for the advice. I was wondering if I added something to Facebook and tagged her so that her friends could see, maybe some would step up. What's kinda hard is a majority of her friends still work, about her age, 54. But it's worth a try.
 
Barbie, thank you for your advice. I was thinking of posting something on Facebook and tagging her (she never gets on it). So her friends can see it too. I'll see what my stepDad thinks.
 
Caro, thank you. My Mom's doctor recommended Hospice or Home Health, but since she didn't qualify for Medicaid, HHA isn't not covered, unless we pay. So I have begun thinking more of hospice.
 
I am meeting with the nurse today & will discuss suction machine and thoughts on Hospice.
 
Status
Not open for further replies.
Back
Top