Help for carers available from Medicare?

[Loulouli]

My father has end-stage ALS. He is bed-bound, tube fed, had a tracheotomy and can barely communicate.
After a lengthy hospital visit my mother has taken him home to care for him as she was unable to find a suitable care home.
Medicare does pay for nurses and physio to come but the nurses do only come for a short time to do check-up etc.

However, even though she pays privately for some help he cannot even leave the carer on their own with him as they are not able to deal with any medical stuff.
This means effectively she is unable to leave the house.
I am not in the US (living in UK) and I know nothing about the healthcare system in the UK. This does not appear to be sustainable to me- is there no other support available in the US? They are in California, Sunnyvale if that's relevant?

 

[Mary2]

I don't know if I am suppose to post on this thread, but our ALS Association provided 1,000 dollars every 6 months for caregivers on a first come first serve basis. This is in GA.

We found a caregiver that I felt comfortable leaving my PALS with for short periods of time. He had years of nursing home experience. I also found an RN who was a stay at home Mom with her children for several evenings a week.

Mostly there is no easy answer unless your parents qualify for Medicaid. Otherwise many of us spend down our savings on caregivers or family members pitch in and help. And mostly we don't feel comfortable leaving the caregivers except for short errands or maybe coffee with a friend.

 

[Tomswife]

Medicare will pay for home hospice 100pct.
The forum has a post - hospice pros and cons. And another post that has a document explaining how hospice is paid via medicare and what health care providers are included.

Your father may be a candidate for hospice services at home. The only way to understand exactly what care would be provided is to ask a local hospice provider to visit the home and review the case. I think you need a physician referral for that visit to take place. You do not have to go forward if it is not a good option, and hospice can be revoked at any time.

In general medicare pays for short term care for a specific care goal and is ordered by a physician. This type of care is usually no more than 6 weeks.

There is a article at the website:

www medicarefaq dot com

faqs/medicare-coverage-for-amyotrophic-lateral-sclerosis-als/

 

[Tomswife]

Sunnyvale California has a care management program for seniors. The program helps seniors find the resources they need to live at home. The services and contact info are in the attached document.

 

[Tomswife]

I am following up about the ability to leave the house. I have been caring for my husband since his dx in August 2022. It has been since January 2023 that he has needed constant attention. We do hire caregivers private pay.
I dont leave the house even when the aides are there. I use that time to get things done at home. I have one caregiver who is highly skilled and i will run to the grocery store when she is there.
I never leave my husband more than an hour or so. ALS needs are complex. My husband cannot speak, stand or move in bed.

 

[Tomswife]

To understand what it takes to care for someone with ALS at home, you may refer to this document that was published by the ALS ASSOCIATION.

 

[lgelb]

Very sorry about your dad. From what I gather, he may already be on hospice? Unfortunately, home care support is not as robust here as in the UK. Medicare does not pay for custodial care, generally speaking.

Some support from the ALSA or local senior agencies may be available, but it's unlikely to be the kind that makes it comfortable for your mom to go a considerable distance from home. Depending on the capabilities of the caregiver, she could walk a loop/shop/sit on a bench a short distance away, that kind of thing, as some CALS do, so if there were a need, she could get back quickly.

Depending on her resources, she might hire an actual nurse for some occasions.

I have to say, the ALS Association brochure above is all very rosy but presents no real options for what we are talking about and glosses over levels of care and equipment.

 

[Loulouli]

Thank you everyone for the taking the time to respond. It helps to gain a better understanding..

 

[Tomswife]

The ALS ASSOCIATION has many resources on their website. This is just one. They are provided by topic.
There are also resources here on the forum.

 

[SeaGunny]

In working 24/7, there are 3 shifts of 8 hours, punctuated by 15 minute breaks every 2 hours and a half hour to an hour break for lunch. This works out to an 8.5 or 9 hour day for a worker. Security guards, (just one of the professions) rarely take the 15 minute breaks except to use the rest rooms. The "lunch" hour is done quickly or is often missed (on purpose) but often eating on the job is not frowned on.

To that end: when there is only one CALS is supporting a PALS, THERE IS NO BACKUP! As the PALS health and ability degrades, the time for the CALS for any other purpose decreases almost to the point of Zero!

So, a single support CALS has no support or backup UNLESS there is additional family or friends who are close by or in residence.

Calling in a care giver from a company is dicey at best. They do some basic (very basic) training but this is not to the standards needed and their training is often furthered by the resident CALS. SO - any CALS finding themselves facing this issue in the future, START TODAY writing the "how to" manual complete with Fire Escape Plan / Emergency Action Plan and location of items need throughout a typical day to include PALS needed items. Caregiver service is not cheap - lacking other support mechanisms.

Take for instance: Meals-On_Wheels: In Texas, if the PALS is on doctor ordered nutrition ( tube Fed), They do not qualify. If the CALS can drive, then the CALS is not "qualified" and support is unavailable. At some point the CALS will only able to leave the house taking the PALS to their next doctor's appointment.

Pedicure: At this point, the only Medicare funded foot care is for Diabetic patients. If the PALS is unable to perform this function and the CALS does not feel comfortable doing this, the cost is incurred by the patient.

The VA offers (it must be requested) Aid and Attendance - for veterans, not spouses. This also may kick in added support such as vehicles that can transport a power chair or modify the veterans residence to ADA standards. I think California has something similar for the general population and will pay a family member to care for a relative. Not in Texas.

A recent visit to a care facility showed no support personnel who were capable of providing patient support. Pretty much a human warehouse with meals provided - but no one who knew anything about tube feeding.

I missed the recent Zoom about anger management that is induced by this decreasing available time to the CALS. The PALS has an ongoing need for personal care. The decrease of time to the CALS, particularly time available for sleep, rest, maintenance produces a very cornered and frustrated critter we call CALS. I had one CALSa (assistant) who was good at the job and supported this CALS for 5 months! It took them over 30 days to recover after leaving!

My PALS is crushed socially as well as physically due to their inability to carry on conversations, do other work or even do basic tasks. It is crushing to me to see her decline, crushes me further when she cries because she is having trouble communicating or recognizes that her health has slipped yet again. In the interest of speeding up the process, I have tried to finish her sentences for her but this only upsets the PALS but this CAL is on a schedule and sitting around for 15 to 30 minutes to read "///////////////////" is as infuriating as someone trying to guess what is trying to be communicated!

IF one hires a company to come in and provide care, I would offer (1) write the training manual, (2) hire a day crew or person. It will take a few days to get them trained, up to speed to care for your PALS - and establish their ability to your satisfaction, It wont be cheap but in the long run, once you have confidence in them, you can leave the house to do any needed errands - sleep in - even take a nap. Those nights will still be hard at times but you will save money due to day rate versus night rate and you may actually be up when stores and or business are open so that you can take advantage of the workers presence - maybe even get to see your own doctor!

 

[Tomswife]

SeaGunny. What a post!
My PALS hubbie has been in the hospital since Friday night. I sleep in his hospital room because I have to operate the bipap and he cant speak and he cant use his arm to press the call button.

I do use paid aides...but I dont leave the house and we have a doorbell like button to call me.

We do have a podiatrist come to the house, and it is billed through Medicare. You may want to talk to the podiatrist office about how they code the visit to be paid. We also have a barber to cut Tom's hair and trim his beard. I do the beard trimming in between.

Even here in a hospital setting I have to advocate for him constantly. Request bed wash. Request condom catheter change. Request more hydration. Don't lay him flat. Dont pull his right arm. And. The hospital wants me to run the bipap.