Hospice? Overwhelmed in St. Louis

[bemindful]

My mom was diagnosed with Bulbar Palsy ALS five years ago. For several years (3.5) she was pretty good at living alone in her retirement center apartment. For the last 1 1/2 years she has had home health care aides 5.5 hours a day. She is very savvy, has done most of the research about ALS herself, decided what equipment she needed and ordered it, even when she got to the point of only being able to fingerpeck on the computer. Finally she (and I) realized that she was unsafe living alone. She let me know she was afraid and thought a nursing home was best.
She is in one now and it is NOT working out. It is awful and she wants to go back home after 1 week. I don't blame her. The place is awful. She has had two skin tears, been held down and force-fed through a Bolar tube when she can only tolerate a pump, left for 30+ minutes when she has to use the commode, etc. Its bad.
She wanted me to look into going home with Hospice, but Hospice will not take a client if they do not have 24 hour care when they are not there. I cannot move in with her.
Does anyone have any experience with Hospice in the St. Louis area? I'm thinking we can move her to a different nursing home and maybe Hospice will make a difference.
I'm so tired and I worry about her all of the time.

 

[samsmom]

I'm new to this and don't have all the answers but have you looked into a hospice house?

 

[bemindful]

Ooohhh!
A hospice house? I have not heard of one.
Do you know about them?

 

[samsmom]

It's an impatient facility run by hospice. There aren't many of them. I've just started investigating them here in MA and I've found 2 or 3. Not sure about costs, etc. will share what I've learned.

 

[bemindful]

Thank you samsmom!

 

[Txgirl]

@bemindful, I found a Hospice House in St. Louis, Mo.
Here is the link de Greeff Hospice House, St. Anthony's Medical Center, Mo.

 

[Txgirl]

bemindful, I posted a link to a Hospice House in St. Louis. it went to moderation. Hopefully it will show up soon.

 

[Barbie]

can you get 24/7 care at home for her? it will not be easy, but it can be done. I would think it would be no more expensive than a nursing home. my gosh--that place sounds awful! you need to get her out of there asap! you might have to be on a wait list for the hospice house, but in the mean time could she move in with you if you cant move in with her?

 

[bemindful]

Barbie, thank you for your reply! I wish I would have shared on this forum sooner. I have felt so alone.
We don't pay out of pocket for the nursing home. She is on Medicaid. Two years ago I moved in with my brother and his fiance in their tiny house and went to working part time so that I could be closer to and more available for Mom. This workplace gives me very few hours any more, which is a curse but a blessing since I have more time for mom. Bottom line, we cannot afford to pay out of pocket for 24 hour care. Crazy that caring for our loved ones is limited by money. Ugh....but that is a rant I won't get into now
Barbie, have you heard of Hospice House before?
How do you care for your loved one 24/7?

 

[Barbie]

I just posted on your other post. I know this isn't easy, but you can do it. Her time is short, and you will never regret moving in with her and helping her in her last days. the thing is, no one thinks this is easy and all of us have said "I can't do this" many times. I wish there was a good answer!

We have a hospice house here in my town--it is very nice but I think their is a wait list often for them. in the mean time, don't leave her in that nursing home for one more minute--it sounds horrible.

good luck to you and keep us posted.