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[Prohobo]

My mother was diagnosed (officially today) with Bulbar ALS. She can't speak anymore and can barely move (wheelchair). She can still write - but that is degrading quickly.

She had fallen a month ago and from the hospital moved into a skilled nursing facility, where she has been ever since.

I visit daily - as the only close family member near by. However, I am unable to care for her on my own. I am not sure how long we have or if she can remain there or moved somewhere else.

She has still not been told about the diagnosis - as I am arranging transport for her to see the Dr. for him to tell her. (I am the POA and Health Surrogate - so I was told over the phone this morning with a confirmation. I knew actually since last Thursday - but was told it was not yet official until they ran a couple of more tests.)

Now I am trying to figure out how to care for her and make her comfortable. I don't know how long we have together.

However - not to sound selfish or uncaring - I have a business in which my employees and clients depend on me and the business. If I ignore it and not give it my undivided attention - they suffer. Which makes me feel guilty that I am not with my mom.

 

[Vincent]

Be with your mom. People on their death bed rarely say "I wish I'd spent more time at the office". Get in touch with your local ALS society. This need not nor should it be something you do alone. There is help out there if you ask.
Vincent

 

[Barbie]

prohobo, you are in a tough situation. I also have a business so I know how torn you are. it is not as simple as be with your mom--as you have to also think about your life after wards and if your business is damaged there is sometimes no coming back form that. the home may be a good situation for her to stay in, or you can think about caregivers at home if you want her with you. I tell you this will not be easy--but it is not for ever and the time you spend with mom will be so important to you and her.

I have trouble understanding why no one has told her the diagnosis yet--does she have dementia? otherwise she should be told asap. do you plan on taking her to the neuro for checkups or finding an ALS clinic? in Sarasota you are very close to the ALS clinic in Tampa so I would get an appt. there for her and just tell her yourself. they will be able to guide you best on equipment that she will need. Also call the ALSA in tampa--I don't love them but they have case workers who can guide you as well. If this is all happening fast, think about hospice as well. their nurses visit at home which is very helpful for someone who has trouble getting out.

caregivers at home may be no more expensive than a nursing home, and you will be able to see her and help care for her when you are at home. I believe that she will get better care at home, but that is just my opinion. it will be easier on you as well because you do not have to worry and visit her when you are tired--you will be at home.

good luck! and so sorry all this is falling on you and her.

 

[Prohobo]

I have been with my mother ever night and on the weekends since she has been in the skilled nursing facility. I am working with the businesses so I can work remotely when needed - so I can be with her.

She is currently in skilled nursing (rehab) as she had suffered a fall and is covered under medicare. This morning I found out that once she gets the "official" diagnosis of ALS - they will give her 48 hours to find somewhere to go. Unfortunately she loves her nurse and staff where she is - so moving her out is not going to be good - right after a diagnosis. The other problem is that we are in medical HIGH season here in Florida (Snow Bird Season) - at her current place there are no long-term beds. I also need to see what IS and what is NOT covered, she does NOT have any long-term care insurance either.

Need to figure this out ASAP.

I have an appointment with the Sarasota ALS MND group for help, suggestions, and support.

 

[Janie H]

Hope you get the answers that you need, I know how stressful it can be.

Janie

 

[GilWest]

Medicare covers NOTHING custodial such as room and board in a facility. We paid $10,000 a month out of pocket for mom to stay a few months in a facility. I would advise looking up an experienced Elder Care attorney in your area. They should be able to give you sound advice on how to navigate the costs. However, the attorney we consulted charged $8,000 for his services. We declined. There are also Medicaid advisors, but they seem shady to me for some reason.

 

[lgelb]

If you are considering the Medicaid ("dual eligibility") route, a social worker affiliated w/ the home and/or hospital she came from ("discharge planning") should be able to help with questions about eligibility and potential benefits, to determine if it is a possibility.

If not, if you bring her to someone's home (not sure if you have any options like that), Medicare will pay for a limited amount of skilled nursing/PT/OT-to-hospice care based on a physician order. But, as Gil says, they will not pay for the hour-to-hour care. As we have discussed in other threads, many of us have found full or part-time in-home caregivers through agencies, portals such as care.com, postings at CRNA schools/colleges or direct advertisements/referrals. Some local ALSA/MDA/MS/SCI/TBI associations also maintain caregiver lists.