Options for home care on Medicaid

[HopeNPrayer]

Hi,

I am trying to figure out if I have no choice but to move in with my parents, or if I will be able to swing a caregiver. My home is paid for, no mortage. I haven't been able to work in awhile, and have gone through a lot of savings. My general quesiton is, do you think I would have luck finding a quality caregiver if it is for room & board compensation only? I am unfornately now on Medicaid. Medicaid can provide up to 56 hours max of ALD's for ie. Any thoughts? I don't want to lose my house. And I will have very little peace moving in with family. I took care of my granfather for years, and due to that I am not elible for social security/not enough corners in the last few years. I would have to go on SSI. ;(

 

[affected]

HopeNPrayer you will need more than one carer at some point. We can never guess progression rates in advance, or how long you have of course, as this disease is so unpredictable in that way. However, you could try for a live-in carer, but all of us that are CALS look for paid caregivers to help us, as it is not possible to do this 24/7 alone.
Getting someone you trust now to move in with you, could be a great idea and then as you get a relationship going you can discuss realistic options for how many hours and duties they can cover just for room and board.
You might want to start you own thread too about how you might manage your needs, for example is your home going to need extensive modifications to accommodate the equipment you will need such as hospital bed, hoist, PWC etc.

How do you parents feel about becoming full-time carers? Have you discussed any of this with them to see what that would look like? Really hard conversations I know

 

[lgelb]

Hi, HNP, moved this to its own thread.

There are people who work for room and board. You expand the pool if you look for more than a CNA or NAC -- someone who wants a new situation, is retired or semi-retired, who may not have experience in this exact situation, but is willing to train. Not knowing how desirable a location your home is in, how large a population you have to draw on, etc., I would certainly start putting feelers out.

But I would also explore Medicaid-reimbursable hospice facilities in your area, if any, against the possibility that you need that kind of help at some point. Here, for example, the major AIDS hospice also accepts PALS.

Best,
Laurie