Breaking point

Rondog

Hello everybody. I’m caring for my mom now 24/7 and I’m at my breaking point. I’m a 55 yr old male, disabled myself being partially paralyzed in my legs from a spinal cord surfing injury in 08’. My mom’s getting worse and my two brothers aren’t much help because they cannot handle her for more than a day. She only has Kaiser insurance, never got Medicare. Only has her pension from the USPS which half goes to her rent. Too much to qualify for Medicaid. I feel she’s gonna need to go somewhere soon but all homes are way more than she gets from her retirement so what do I do?

AConcernedSon

Hey there, just jumped on and saw this post. I've been in a pretty similar spot. In my 50s, quit a job to stay home with a parent with dementia, had days when I was literally just ready to snap. And the cost of memory care is absurd without insurance. If you haven't yet, try to find some day groups in your area--for us it was the local senior center that held an alzheimer's group a couple times a week--to get your mom some socialization and you some rest. And if that's not enough, look into more frequent in-home care options--visiting nurses or more. Even a 27/7 in-home help can cost a lot less than a memory care center.

Might not be the answers you're looking for, but I definitely know the feeling. (And siblings who just choose to claim "I can't cope with this" and assume you can--been there!) 

Hang in there. I always remind myself if the shoe were on the other foot and my dad had to look after me, he'd do everything he can for me. Its hard to remember that in the heat of the moment, I know.   

Rondog

Thanks for the info bud! Sounds like you know where I’m coming from. I’ll look into those things.

harshedbuzz

Do you have the legal documents in place to act on your mom's behalf?

If not, your first step should be to consult with a CELA. You can find one at nelf.org.

You need to talk to a CELA about Medicaid planning in your state. There are legal strategies to qualifying for Medicaid that vary by state so this is something for which you need expert advice. Sometimes a trust can be set up. Sometimes Medicaid will pay for in-home help. Sometimes it will cover MC, other times only a SNF.

I am going to disagree with what A Concerned Son said about in home care being cheaper than a MCF. That is just not the case where I live; he's outside Boston which I know to be higher priced as my aunt was in a facility on the North Shore. An agency HHA costs a little over $30/hr here. A privately hired HHA runs about $20-ish and hour but you have to do the vetting and payroll. A live-in arrangement can be cheaper than hourly, but you have to be very careful around labor laws lest you be forced to pay overtime. 

HB

MN Chickadee

I would get to an elder law attorney immediately. If you can get a CELA great but they can be hard to come by in some areas. There is exactly one in my state. However there are a couple local attorneys who are not certified CELA but practice nearly exclusively in elder law and have good reputations. Either way an attorney can help plan for her long term care. In many states, if a person's income is a bit too much for the medicaid cutoff the attorney can set up a trust where her income goes, it pays the facility each month and medicaid makes up the rest. But this all must be done carefully by an attorney. Medicare does not pay for any long term care but you want to get her enrolled for other needs such as hospitalization.  The attorney can help with all this and do the POA paperwork if that isn't done yet. They will know if there are any programs in your state that can help, if she or her spouse was a veteran there may be services etc.

Cynbar

Yes, consult an elder law attorney who can look at the specifics of your mother's case and advise you. She should be able to get Medicaid for long term care once she has spent her assets down to the limit. A lot of people are over the income level while they live in the community (even if they are already down to the asset limit) so they don't qualify, but would qualify when they enter long term care. You have to get the financial piece in order first, but it should be workable unless she has given a lot of money away within the last 5 years. The, start looking for a good facility in your area that accepts Medicaid patients. It can be done, very few people have the funds to be private pay in a facility for very long.

Rescue mom

I would also say that in two states I’ve been, MC was much less expensive than having a paid caregiver in the home 24/7. Agency caregivers run around $35-45 per hour; (about $950 for a 24-hour day): private ones may be $20-$25. 

If you only need them a few hours, that helps; most agencies have 3-hour minimums. And day care can also give you daily breaks.

Very good MCs are about $8,000 a month.

 If you can provide an aide’s live-in space—the aide has their own rooms and basically lives there— the hourly caregiving cost may be lower.

Don’t be so sure about making too much for Medicaid until you talk to an attorney who specializes in that. States differ, but many many people are surprised to find it can work. 

You also should check with your local Alzheimer’s Association. They can tell you what kinds of facilities, care homes, day cares, etc., are available in your area.

s128

I understand.  It's just been me and my husband since the pandemic started.  Not that my kids came around before, and today I feel like I'm at the breaking point.  Like I want to run somewhere and hide.  I am not facing same financial issues you are, But I understand

Stuck in the middle

Rondog, you've gotten some good advice above.  I would also suggest that your LOs income is not too high to qualify for a Medicaid NH.  To oversimplify, imagine a NH that costs $8K/mo.  Income is $2K, Medicaid pays $6K. Income is $7K, Medicaid pays $1K.  They call it "spend down."

I didn't quit my job to care for my mother, although I financially could have done so.  My mother and my wife under one roof would not have made anyone happy.  I placed her in a NH a few blocks  from my office and made frequent visits at unpredictable times.

My mother cared for me when I was a child, but she didn't devote her whole life to me.  She had three other children, a husband, and a life of her own.  I looked after her in her old age (without help from the siblings), but I didn't devote my whole life to it.  Like you, a have a wife, but mine couldn't live independently.  I also help a disabled son, a few years younger than you.  And someone has to take care of me.  Please don't trash your marriage over this.  Your LO wouldn't want you to.

aod326

One more vote for an elder care lawyer. Initial consultation should be free, then spending a little money getting their help will be money well spent. When I started on this path I assumed there would be no way DH could qualify for Medicaid, not least because I was (am) still working.  After the spend down period (attorney will explain), it would have been straightforward for him to qualify, without leaving me totally bankrupt.

People always say make sure you look after yourself. That often feels impossible even when you remember that you won't be able to help your mum if you're out of commission. (And it sounds like your brothers wouldn't pick up the slack.) A great first step is joining these boards. You'll learn many tips from people who have been/currently are in your shoes; plus you'll get loads of support.

Good luck.