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Coping Without Assistance


futurehope
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I currently am married, and that is good, good for me. My husband helps with a lot of things. There are so many things he helps with I cannot even name them (bless his heart!).

But being the independent type that I am, my thoughts sometimes wander to the day (it may or may never happen) that I am alone and need to care for myself.

Do any of you deal with your situation alone? How do you do it?

I just need to hear from people that are disabled enough that they need assistance. I need to hear options.

I would like to know HOW it is done.

Thanks much.

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Hi,

I live in Canada. We have assistance here but I can't live alone because I am too sick to care for myself all the time. There are some days where I can take my shower and feed myself but on other days I need assistance.

The level of need that I have is greater than what the government would give if ever I wanted to live alone. So living alone is not an option for me. I have problems getting help right now because I take to many of the "hours" and I have had a cut down in service (75%) last week. They said I take too much of their resources.

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Hi,

I live in a house with someone else.

I have assistance for going to doctors but the volunteer office decreased the amount of transportation they are giving me because I was using too many employees. I am now only permitted 2 services per week. I have to choose what is most important, ie doctors, grocery, others.

I have a nurse coming to my place to give me the Procrit shot.

I seldom leave the house alone because I faint really fast and I don't have time to sit down or cross the street. The only time I go out alone is when I can park immediately in front of the door and someone is checking from the window that I am making it to the building.

I have a power chair that I use to go about where I live but when I go to the hospital I use my regular wheelchair.

I am spending most of my time reclining on the couch. You would be surprised to know that there is still a lot of action in my life!

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I live alone and I can tell you that it can be tough. I don't have any family support. The only thing that has "saved" me is a handful of people from my church.

There are some individuals that "act" as my family..they take me to Dr appts, help me get groceries. If I'm really really sick sometimes I can ask one of them to stay with me for a night or two. They will make meals if I need them to etc.

I utilized a home service agency for a while. They were not nursing care but would come in and help me prepare meals, take me to the store, do laundry and light housekeeping. It was expensive though $15.00 an hr plus mileage if they drove you anywhere and they had a 4 hr minimum charge per each day of service. Being on disability pay I couldn't afford much.

A social worker advised me to go to assisted living however I can't afford it. If I were to get worse I would have to go to a nursing home which I can't bear the thought of at the age of 37!!

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Poohbear,

I really appreciate your input and I wish you continued strength and courage.

I assume your encounter with a social worker was at a hospital?

How does anyone pay for assisted living? Is it with Medicare or one's own funds?

Anyhow, after reading the posts on this board and knowing my own situation, it seems obvious to me that people with this medical condition need assistance. Most people on this forum seem to be young enough or fortunate enough to have family.

I'm 54 years old. I can't help but wonder what life would be like without a helper.

Obviously, you do what you have to do.

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I have a husband who is home all the time. But he, too, is disabled from a head injury. I really need housekeeping assistance because neither of us are able to do the heavy stuff like vaccuming. But We don't qualify... the man next door, however, who is 70 qualifies solely based on his age! He drives, does yard work, built a shed a month or so ago, and he runs a chain saw! Okay, I am glad he gets help... but I can't help but wonder where is the parity in this?

I do not qualify for Home Health because I get out of the house to go to church.

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Futurehope,

Yes, it was a hospital social worker that recommended assisted living. I agree it may be a good idea but I don't have the $ for it.

No, Medicare does not pay for assisted living. You either manage on your own (if you don't have enough $ yourself) or you get so sick to where they put you in a nursing home.

Dawg Tired, You are right. The "system" is set up so poorly and many people who truly need help don't get it. Where I live there are tons of people here illegally and THEY get FREE service and I can't even get a low $$ service let alone anything free yet I paid for many many years into these services. It's awful.

Futurehope, one of the best pieces of advice I could give you that may "pay off" in the future is to try to purchase a long-term care insurance policy that would pay if you needed either home health care or nursing home care. Shop around and compare policies carefully. Hopefully you could qualify for a plan. I know an elderly woman who has long term care and she has home health care coming in 6 days a week for 4 hours a day; if she didn't have this she would be in a nursing home which would cost much more than home health and luckily she has a policy that pays for this home care.

If you can't qualify for a policy then if possible, set up a special savings account of some type to "ear mark" money for self pay home care if/when you need it.

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Poohbear,

Will do. Thanks for the advice.

Yes it seems unjust when you see who gets help and who doesn't and

BTW,

just because I make it to church does NOT mean I'm able to care for myself all day every day.

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Future hope, sorry I haven't responded, am not up to much these days. I barely post, geez, i barely even lurk anymore.

I have my husband, who is a true God send. But i worry about what would happen if anything happened to him.

We would lose our house, car, everything, including insurance. I could not, in a million years, pay our bills on the pittance I get from disability. I do not have rich relatives and I don't have a church family, as the noise in church about kills me, so do not attend.

My son has three small children and a wife to support and my other son has multiple health problems too.

So i totally understand your concerns. My hubs works something like 60 hours a week so we can pay our bills. He is not in his 20's anymore. I am 51. When I got too sick to work, we had to take a loan against his retirement to get by, so even that isn't all there.

When you lie around all day, these are the things you think about aren't they. I do not love my husband because he takes care of me. I just love him. But i also know he is the only reason I'm not on the street, prone. This is not the way it's supposed to be....I don't have any answers, because I'm in the same boat.

No one will give me anymore insurance or disability insurance because I am so sick. Or if they will, the premium is higher than the cash you get. Where is that winning lotto when you really need it....morgan

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