Living at Home or Go to Assisted Living?

[Hope4Me]

After recently moving to AZ and selling my home, I am trying to determine what is best for my permanent residence, move into home or assisted living. I am currently at my brothers home until my mother and we find the best place to go.

I know in the future I will need more intensive care and even now need to get help for my mother since she is 82 and care taking for me is taking a toll on her. My doctor has not ordered home health care so Mom is hepling me do everything.

I have been researching the costs for assisted living and it seems pretty steep. But at some poinnt she will undoubtly need assistence too. I am just not sure how long I will be here with this disease, no crystal ball!

I do not have a lot of money to go to the best assisted living places. Many of them seem to tack on a lot of charges and the ALS Assoc. rep told me many care facilities dont want ALS patients due to the amount of care that goes with it.

CALs and PALs - do you have an educated position on this? What has worked best for you?

Thanks in advance!
Hope4Me

 

[lgelb]

I seem to recall Medi-Cal benefits are pretty rich. If you qualify due to lack of income/assets, that should net you some kind of home health and/or SNF benefit, when it comes to that.

 

[lgelb]

Oh! Sorry, I saw your CA address before the "move to AZ" sunk in.
Still....I would see what you qualify for, before thinking about where.

 

[Atsugi]

I wish I knew the answer or at least had relevant experience to share. All I can do is tell you my experience as a CALS.

My PALS stayed in our home the entire time. She progressed very rapidly from first symptom to last breath. It was quite labor intensive. Although we had nurses, we found that none of them knew the first thing about dealing with ALS or paralyzed people in general. They were there just to watch over my PALS so I could get some sleep from time to time. I'm not sure most assisted living nurses would be any better. Maybe you can find nurses who understand paralysis and ALS.

In my experience, my PALS needed someone (me) to monitor and manage all aspects of the patient's daily needs including assisting coughing, suctioning airways, administering meds, feeding, watering, and removing waste, including placing catheters. Remember, there are unique rules for oxygen in ALS. Also, my PALS needed someone able to reposition blankets and limbs at all hours, to pull the patient back up to the top of the bed, and to roll, dress, bathe, and transfer the patient. I know all these things can be learned, because my 13-year-old daughter eventually became fully qualified to do all these things.

In my family, we were fortunate that my PALS was a doctor and trained us before she couldn't speak. Your case may be very different. But that's my experience. I hope something I wrote might possibly help you in your search for appropriate care.

--Mike

 

[lgelb]

It is true -- these things can be learned. But one aide for both you and your mom (I am assuming no other family's in the picture) isn't going to be enough at some point, if her health deteriorates. Still, you are asking about you so I'll focus on that.

I completely agree that you can stay at home, as my husband did. I was only referring to the financial aspect. If you can stay at home, and have a home that accommodates a power wheelchair and Hoyer-type lift, that's the way to go. Then the process will be more about accessing help.

 

[Hope4Me]

Thanks for your replies.

Wow, I'm trying not to be overwhelmed here but 24 hour care is a daunting realization. It is taking me weeks just to get a doctor ordered speech therapist and a sleep study, 5 weeks to get PT in to the home and more I will not complain about. To know I will need suction, feeding tube and much more, I could die before I get any of this stuff when I really needed it.

Sorry to complain but we cant get the doctors assistant to cal us back when we have questions. At least in California, the UCSF doctors office would cal us back and follow through on orders. I must say I'm getting disappointed and worried about my care here. I'm hoping it will get better because to switch physicians now would be very involved.

As far as living at home, this is my preference but trying to find a handicap fitted home is looking like its going to be a challenge. It looks like Medicare will pay for home health but I am trying to verify that with SHIP now.

Thanks again for your wise experience!
Hope4Me

 

[Atsugi]

Hmm. Nonresponsive doctors' offices always make me angry. I'll tell you how I successfully got everybody's attention:

I would never "just ask" for what I needed. I would always ensure the person I was dealing with was personally dedicated to helping us. I would open with: "John, I hope you can help me. My wife is dying. She has a terminal disease and not long to live. We need your help. Can you make sure we get..."

Even when submitting routine paperwork, I would include a cover letter that explained our dire circumstances and asked for expedited service.

 

[Hope4Me]

Thanks Mike _ we wil try that!

 

[lgelb]

Hope, unless you have certain illnesses apart from ALS, you should not need a sleep study to qualify for BiPAP, if that is the goal.

As for accessible living, knowing nothing about your area, newer apt. buildings are usually a possibility. That is where we ended up. These sometimes overlap w/ "senior housing" where rents can be lower and apts. still accessible. I don't know your age, but with your mom in tow, you qualify for everything "senior."

 

[Hope4Me]

Thanks. The sleep study is just a simple one where they measure my oxygen level via a finger device. At this point, I don't qualify for bipap the way they measure it at clinic. My doctor wanted to check another avenue.