Need more advice than “you need help”

Status
Not open for further replies.

kristenalff

New member
Joined
Apr 18, 2021
Messages
1
Reason
CALS
Diagnosis
02/2021
Country
US
State
CT
City
East Hartford
We are in Connecticut. My mom can’t walk or move her arms. My dad is 73. He can’t do this anymore on his own. He is just not trained in it and he gets so tired he gets careless. I (daughter) can’t lose my job. I am already not sleeping because I have to work all night to be able to take care of her and work. My dad has lost 30lb so far from not having time to eat and the stress. We have Medicare plus. I have read that Medicare can pay for at least some home care. Does that home care do transfers? We just are at a loss. What do we do? We need concrete advice about care and all are we getting is “you need to hire help”. We know we need help, but we don’t know how to get the right help and we don’t know how to get it without going totally bankrupt. Thanks in advance.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,482
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Sorry you have to join us.
medicare does not cover custodial care. If you have a skilled service ( a nurse monitoring a wound or PT to teach you range of motion are examples) while that is happening you can usually get an aide but it would not an all day things but rather an hour for bathing, dressing and that would end when the skilled service does.

medicaid programs vary by state but often do cover some custodial care. There are income / asset restrictions though.

I don’t know what medicare plus is. Is it a Medicare advantage program? If it is you would have to check your specific benefits to see what is covered.

sorry
 

GXTrex

Distinguished member
Joined
Dec 2, 2020
Messages
117
Reason
Loved one DX
Diagnosis
12/2020
Country
US
State
NY
City
Long Island
You should speak to an elder care attorney who specializes in Medicaid planning. I am working with one in New York who was able to work with my parents to get everything in order so they would qualify for Medicaid without having to get rid of all of their assets. We have to use an irrevocable trust and a pooled income trust but did not have to give up all of their assets. Once you are approved for Medicaid, they will evaluate your mom and provide an aid for custodial care for an amount of hours they see fit at no charge as long as you follow Medicaid's rules for assets/income. She could be re-evaluated in the future to get more hours when needed.

Again this is my experience in New York so please speak to a lawyer in your state.
 

nona

Senior member
Forum Supporter
Joined
Oct 1, 2018
Messages
555
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
New London
I'm so sorry Kristen. I wish it were easier. I don't know what Medicare Plus is, but I am on Medicare and other than PT/OT, Medicare won't cover the day-to-day care that she needs. I think that you should start by contacting a local visiting nurse association and ask to have a home visit and assessment. The social worker should be able to clarify what Medicare will cover. I imagine that their hourly rate for private care is high but they can buy you time while you explore other options. I have needed help for three years and I've used nursing students from the local college, people I've found on care.com, and friends who responded to a Facebook plea. Everything is trainable and the yes, they will do transfers, bathing, feeding. You can decide what you want and on what schedule. Maybe your father can get her up in the morning but needs help at night. Feel free to PM me for advice. You got this.

Also, have you connected with Compassionate Care ALS in Falmouth, MA? They don't provide home care but they do have a social worker and insurance expert and their whole mission is to support patients and families through ALS. They are angels. CCALS.org
 

Gorby

Distinguished member
Joined
Nov 5, 2015
Messages
114
Reason
DX UMND/PLS
Diagnosis
08/2015
Country
CA
State
BC
City
Vancouver
I would try your local ALS Society. They should have a social worker that can suggest some services.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,110
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Sounds like you need a Hoyer lift for transfers. Often your ALSA chapter may have a loaner, or we can point you to options. Does she have a power wheelchair? A hospital bed?

Nona is right -- help doesn't have to be skilled, a conscientious student can be fine. Not sure what your budget is, but around here that would be a minimum wage job. Paying in cash doesn't hurt.

Let us know how we can help.

Best,
Laurie
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
202
Reason
Lost a loved one
Diagnosis
1/2015
Country
US
State
TX
City
Houston
Kristen,

Have you thought about hospice? They offer palliative care, such as showers, physical therapy, etc. it is not custodial care, but can relieve a few of the tasks that can be physically demanding and is covered by insurance and Medicare I believe. I kind of put together a patchwork of assistance in the final couple years that included hospice and aids that came in three mornings a week to get him transferred, do personal hygiene, fed, pt, etc. I did it the rest of the time, but I agree with the folks above who say contact nursing schools and an attorney to see how you can get more care than that.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
202
Reason
Lost a loved one
Diagnosis
1/2015
Country
US
State
TX
City
Houston
Another thing hospice will do is offer to take the patient to their facility for a week every so often so the caregiver can have a respite. We didn’t do that, but it could be a good option, in your situation.
 

Lkaibel

Very helpful member
Forum Supporter
Joined
May 9, 2016
Messages
1,441
Reason
Lost a loved one
Diagnosis
06/2016
Country
US
State
MN
City
Minneapolis
The paid care we did get was via hospice. It’s the best and easiest option for that, and is particularly
Helpful with things like bathing, pain management, and nurse visits. We had around 12 hours a week of hospice care, and we also had 4 hours a week of a hospice volunteer. This really is a grotesque situation in the U.S., but I like the suggestions here for examining other options as well.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,337
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Please do let us know of any good options you end up going with as we would like to know you got help, and it really helps others who ask again in the future.
 
Status
Not open for further replies.
Top