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Plumeria84

Active member
Joined
Jul 22, 2011
Messages
42
Reason
CALS
Diagnosis
08/2009
Country
US
State
FL
City
Palm Coast
Hi everyone. I haven't been on in a really long time. Just hiding out l and trying to make the best of it.
But I've reached my point of exhaustion. Mentally and physically.

My question is , is there ANYTHING out there to help people who are dealing with ALS.
I just don't understand how someone is suppose to be a caregiver 24/7, work, take care of child, home etc... it's too much.
I've been doing this for 5years now and it's all finally caught up.

It takes everyone ounce of energy I have to get myself outta bed each day. And truthfully, if it wasn't for our young son, I might not.

Even if I were to quit my part-time from home job, we still do not qualify for any assistance (food stamps, Medicare/Medicaid etc) so that would leave myself & our kid uninsured. If I understand correctly the cut off is $1600 for a family of 3. And that SS payment are counted as income when it comes to that.

Am I missing anything ? How do people do this ? Are there any programs out there that ALS association doesn't tell you about.

Sorry I'm all over the place , I'm so exhausted and can't focus on anything - and doesn't seem like any programs try to make it easy to understand if you qualify for anything or not.

Thanks
 
You definitely have my sympathy.

In my support group meeting, I was the only caregiver who was retired.

I can not imagine trying to be a care giver and a wage earner .

Being retired, being a caregiver for my wife is my full time task and I can't imagine people still with a job juggling care giver and wage earner.

Very tough to do both ( physically, emotionally, and mentally )
 
If he is on disability SS, check what help Hospice can give.

They charge.................but they bill Medicare ( or insurance) and you never get billed for what insurance doesn't cover.
 
I'm in Canada, but maybe you have similar in Florida. I receive about 5 hours/wk - free - from the Red Cross. It's NOT personal care, but rather help around the house. Whatever I need. ( laundry, cooking, cleaning etc.) I understand the muscular dystrophy and march of dime associations also have similar "helper" programs as well.

Failing that, have you heard about ' share the care'? It's an app which you use to set up help from friends. You indicate the various tasks needed (from laundry to grocery shopping) and your friends can sign up. Having someone mow the lawn, take your car for an oil change, sit with your PALS a couple of hours, would make your life so much easier.

It's my personal experience that people really do want to help - you just have to reach out.

I hope Barbie chimes in. She's also form Florida and is likely up in everything available.
 
I am so sorry you are going thru so much and feeling so exhausted. It is overwhelming I know. Elaine-I wish we had some kind of help like you have but not that I know of. Are you in the same ALSA area as me? (out of Tampa-Rhonda is my care coordinator). They have a respite program that you can use--either for a get away or on a weekly basis to help you. give them a call--the money is there to help you and even though it is not a lot, every little bit helps.

I also put my husband on hospice so I could get a little help as well. I know that some pals are able to stay on hospice long term but that was not the case for us. my husband was on it for 11 months, then they discharged him because he was not actively dying. not all hospices are the same, but that was my experience. bot for those 11 months, I had a caregiver 3 days a week for a couple of hours. she gave him a bath and fed him on those 3 days and it was a huge break for me.

there is healthcare for kids in FL--Floridakidcare dot org. also, food stamps have lower limits for the disabled so you should actually contact them to see if you can qualify.

You can not just continue until you drop--something needs to give. you have to ask for help, not just from one person or group but from several. It will take energy and effort that you probably don't feel that you have right now, but if you go down from exhaustion, who will take care of your pals and your son. Please feel free to PM me, we can talk more.
 
Thanks for your replies.

We have used ALS association's respite care program and I should get in touch with them again.
It comes up to about 20hrs in a 6 month period, which is nothing, but I guess 2 good nights sleep would be good. I use to have them come out for a few hours once a week but that almost turned into more work for me than help.

Partially because PALS can be kinda difficult. He's use to me - if anyone else tries to feed him, he chokes a lot more. If they try to bath him he stiffens up and nobody can handle him.
Just seems like we've had a really hard time finding someone who's capable of taking care of him (they physically can't handle it).

About hospice - we actually had hospice come out at one point but both decided it wasn't time for that yet.
They seemed very quick to throw him on medications and we're really not big on taking meds unless there's no way around it. Idk..just didn't seem right.

Besides, sounds like it's not that easy to stay on it ?
We even got kicked off home health services because PALS was doing " too well " . Sounds crazy, doesn't it ? The guy can't do a single thing except type with his knuckles but that's not a good enough reason to at least have an aide for showers.

Well, I'll be taking a little break from work (a few weeks) but hopefully that takes away the stress for at least a little bit so I can recharge a little.

I'll have to check about the food stamps. Last I checked we didn't qualify but I'm not sure that they were looking at an adj limit for disabled.

Thanks again...
 
you hang in there. I had a lot of trouble getting my pals to allow others to help care for him--but luckily we got past that. it just took a lot of persistence over and over again.

why does it all have to be so hard? :(
 
I am in ill. We have catholic charities, knights of Columbus food depositories. Also several local charities ,respond now, ect. I have often thought how that guy in Boston got so much money for his boat, and the bullied grandma got so much money. How could we start people helping people and just send what we can to those in trouble. Wish I had a magic wand for you. Sending love and prayers. Mila
 
if your pals is a veteran, get in touch with the va. als is considered to be a sevice connected disability and you may qualify for a few thousand per month plus grants to make the home handicap accessable and a wheelchair van.
 
I'd like to help. Can I email you privately?
 
KofC and St Vincent dePaul Society are often a HUGE help to families in need.
 
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