Single no family no caregiver

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dragonlibra

Active member
Joined
Jul 11, 2011
Messages
89
Diagnosis
09/2011
Country
US
State
PA
City
McKeesport
How to handle? If I have ALS which is looking likely I doubt I could function through the winter in my house. What personal care homes handle ALS? That will also fast use up my retirement funds.

And cleaning out my house 50+ years of stuff. Martha Stewart doesn't live here is on the frig. Probably owe more than house is worth. Old home in depressed area.

And then there is my near 16 year old dog.

I would bet people like me here. Advice & wondering how you handled.
 
First of all, are you a veteran? If so, you will need to get some help there.

Also, contact local ALS organizations. They will be very helpful, usually.

Others on this line will give you great ideas. Try to give a little more info.

What have you done so far. Medically. What are they saying?
How are you feeling, what are your current problems, medically?

Sorry your here, but glad you will get the help, advice you need to
get started.

Semper fi,

Gentleman Jim
 
First of all, are you a veteran? If so, you will need to get some help there.

Also, contact local ALS organizations. They will be very helpful, usually.

Others on this line will give you great ideas. Try to give a little more info.

What have you done so far. Medically. What are they saying?
How are you feeling, what are your current problems, medically?

Sorry your here, but glad you will get the help, advice you need to
get started.

Semper fi,

Gentleman Jim
Not a vet. Lost most of use of right hand. Left is weakening. Walking and balance off. Can still do steps with rail though a bit of fear. Not yet definitely ALS diagnosis though getting close I think. Can still drive though hard turning key at times. Can still dress but had to give up jeans for elastic or drawstring pants. Bras an adventure. Velcro shoes.

Dr already asked if need to look in to assisted living facility. Feel like there may be before winter sets in.
 
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In addition to Gentleman Jim's suggestion:

If you are of the age for Medicare, I know that our local health department has programs in place to help people in their homes. If you already have Medicare, you may want to contact your local health dept. to see if they have any programs that would help you to get help in your home. Also, if you meet the income criteria, Social Services may have some programs that might help you pay for care in your home. Also, you might could check with the hospice people at the local hospital. Our local hospice has a list of caregivers/sitters that they use. You would have to do (or should do) a background check on them if you use any of them. The caregivers that I have work for an organization. The organization does the background checks and takes care of withholding income taxes and stuff too. We just pay the organization. The two caregivers we have now are pretty good and dependable. Though they are contracted for a minimum of 4 hours per day. My husband works for a nursing home. He suggests that if you are looking into an assisted living option to do a surprise tour, ask to have a complete tour of the place. You will get a feel as to how it operates because they won't be expecting you to come in there. He suggests just before lunch time or just after lunch time. Ask whether their rates are income based or not. Some places have income based rates and some do not. Ask what services are included in the room rates. Ask what are the procedures for getting admitted to the facility (i.e. do they need documentation from the dr. is there a waiting list, and the like). Also, see if you can talk to some of the people living in the facility to see how they like living there.
 
Also, hubby said to ask to see the last state survey done on the assisted living facility. This will give you more information on the shortcomings of an assisted living facility (or a nursing home for that matter) because the State of PA has pretty tough regulations on them.
 
Also... some assisted living will let you bring the dog, and even help with walks etc. My mom's dog lived at assisted living with her for several years. Can't hurt to ask.
 
Also... some assisted living will let you bring the dog, and even help with walks etc. My mom's dog lived at assisted living with her for several years. Can't hurt to ask.

That would be nice. Wish Ninja would tell me where she dug up fountain of youth. Been acting like a pup.
 
I am alone in dealing with this. I cannot afford an assisted living facility. I get by with two paid, part-time caregivers. One is kind. I deal with physical and emotional abuse from the other. It is this or any Medicaid nursing home. I have seen what happens in Medicaid nursing homes if you don't have lots of family visits.
 
I am alone in dealing with this. I cannot afford an assisted living facility. I get by with two paid, part-time caregivers. One is kind. I deal with physical and emotional abuse from the other. It is this or any Medicaid nursing home. I have seen what happens in Medicaid nursing homes if you don't have lots of family visits.

I feel for you Lobster. That hell scares me. I figure I have enough retirement money saved that maybe I could do a couple years of assisted living before being financially drained. I don't know I'd want to continue when it comes to time I couldn't eat normally and needed help breathing or couldn't speak. Might be time for hospice.a
 
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Lobster,
That really worries me. Can't you get rid of her? That's illegal to emotionally or physically abuse someone. Could ALSA help you find someone? You shouldn't be at someones mercy like that.
 
,lobster, come join me we can fight this disease together.
 
HI

Is it possible that you try to find a live-in caregiver? There are people out there looking for a place to live and anyone can be taught to be a caregiver.

Many assisted living facilities will allow pets. The one I was in did when I lived in NC

Medicare/SSI will kick in if you are definitely diagnosed with ALS. There will be no waiting period for Medicare (Most have to wait two years)

Lobster I feel so bad that you're dealing with someone that is mistreating you. I wish I still lived up there. I taught high school in VA in 2006.

You can also consider reverse mortgages perhaps if cash is an issue. Not entirely sure how they work exactly.

Many assisted living places are actually in homes rather than large facilities. (I've taught several owners here that were opening their own facilities) Some medicare/medicaid facilities are terrible definitely. But, there are also some good ones. The one I was in had some bad eggs, but overall was nice--allowed me to have my cat and took my medicaid--it cost me nothing out of pocket (which was good, as I didn't have ten cents to rub together)

But--ultimately, if you want to remain in your home.

Generally, assisted living has better care overall than nursing homes do. If you have a good friend to be your health care advocate it would be something to think about.

To Lobster--have you ever contacted the ALSA to see if they can help you perhaps find a GOOD caregiver?
 
the ALS Association social Worker told me my only option was a Medicaid nursing home.

I wouldn't have cell phone, Internet, or access to anything. The ones I've visited Were like prisons And smelled like feces. the nursing home would take 100% of my income and assets.
 
Hello Lobster; dragonlibra; Now there is a couple of interesting names. :)

You just break my heart. I know that there are others also that have a rock and a hard place.
I wish I had the answers, but you know I don't. There are a few suggestions though as others
have given thought.

1) Try contacting a local University to see if they have any one interested in assisted living.
Screening very important and yet it is an idea.

2) Write to some local church's and see if there would be some who could help.

I know this is somewhat out of the blue, but it is sowing seed of sorts and we are praying
that you would be successful in your search.

Jim
 
dragonlibra,my heart goes out to you.
i hope you find a good place were you can take your dog with you..........godbless.

lobster,fire her fat/skinny arse..........i am sure in this economic climate you could find someone else.,godbless you too.

my mum and a few friends offered to do some partime care for me but they have enough on there plate and i dont want to eventually be a burden,my son works partime so is home 3-4days a week .
so,i am going to see about hiring someone a few hours a week...........to help with things i can no longer do.
at the moment i would not be able to afford it but i can apply for my personal care/disability part to be put up..........i get higher rate mobility and lower rate personal care at the moment.
 
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