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Ataxia Support Network

Can use your input here


#1

What is a person to do when the time comes or leading up to it when they cannot take proper care of themselves if they have no family? I know about long-term care. But what if they just don’t have the money for the long-term care and they don’t qualify for Medicaid but only have Medicare?

I developed this illness when I was 21. Medical technology was not as advanced as it is now so I had to go through a brutal test called a pneumoencephlogram [spellling?] which led to my being misdiagnosed with MS. That test is not used anymore since the advent of the MRI. Besides, it was too barbaric.

Because I didn’t know what was really happening and what direction my life would take, I never got married. I’m now almost 73 and I have to start thinking about the future. Any advice? Thanks.


#2

Choices are limited here. I assume you have too much money to qualify for medecaisd, but not enough to pay for care for long. The usual advice is to spend your money on care—either in the home or in a long term care facility, and once you meet the medecaid requirements, use Medicaid. A social worker in the long term facility you are interested in can explain the process to you and give you the specific amounts.


#3

Thanks for the information.


#4

:neutral_face: This thought has recently crossed my mind too. It’s inevitable, given the circumstances, that many of us will find it necessary at some point, to consider long term care. At the moment, I live with my Husband, he’s 73 and our house has stairs. For practical purposes moving to a bungalow would hopefully enable us to manage reasonably independently for several years to come, barring any serious health issues.
My Uncle (no ataxia) stayed fiercely independent until his late 80s, with Social Services calling 4 times a day to make sure he had meals, and a nurse calling in to administer Insulin. Care/nursing Homes in the UK can often cost anything up to £40,000 per year, depending on which part of the country it is, and the type of home involved. There are exemptions if someone has a significant health care need, and they become eligible for Continuing Healthcare. And, other factors can be taken into account.

I find it hard to accept the probability that I will need long term care, my children live locally but, as things stand I’d exhaust every possibility to avoid them having to be responsible for my day to day care. :thinking: xB


#5

I suppose here in Canada we are lucky (healthcare system) sometimes I consider myself lucky to have such a system.
But one thing we may share in common is the option to ask our family physicians/healthcare professionals what is best.
Just this morning I am phoning my local mobility provider to arrange an in-home assessment. A service provided by them free of charge. I look forward to see if they can improve my quality of life and mobility issues in any manner.
We here in Ontario Canada have available to us also funding for assistive devises (ADP). They have consultants that assess what kinds of assistive devises would best suit and benefit.
The difficult part is mentally coming to terms with the fact that you may need help. This is something you need to self assess. (don’t be a stubborn ass like me)!LOL.
I, like you, and many remained up until a few years back physically active, I attended the gym 3-4 times/wk ate health promoting foods and kept my body in generally good condition.
Now it just about breaks my heart to witness myself fall into a physical slump. But deep down I know this is the way it is.
I realize my situation may not help you, but just know that you are not alone when considering what the future may look like.


#6

FYI, the mobility provider has indicated it would be best to have a occupational therapist come to my home and conduct an assessment on myself and my home. Not that they are not willing, but the lady was honest with me and said they really have sales in mind. They make equipment recommendations based on an individual’s specific needs reliant on a OT’s assessment.
Alternatively, if I am deemed not be able to care for myself, if the assistive devices cannot provide me with the necessary tools to care for myself, I will be left with no choice but to search out some type of long term care. I know this form of care for me is inevitable, regardless of the kind and loving family around me.
I’m not sure how it works now, or how it works in the US, but it used to be that one would have to liquidate all their assets to pay for living at a care facility. This would mean losing all forms of independence. Once the personal funding would be consumed, our illustrious healthcare system (the tax payer) would pay for the remainder.
Upon utilizing the government funding, you sacrifice all the unnecessary pleasures you were paying for, such as in room TV vs. a communal television room, a semi private room vs. a private room, and the list goes on.
It seems to me that if one’s faculties are gone, this would be (a care facility) much easier to digest.
My Family Dr’s appointment is Friday, he will make the necessary arrangements to have an occupational therapist visit me and my home.


#7

If you have to liquidate all your assets, do they leave you any money to be able to buy personal items? Is that a one-time thing or do they allow you to receive any money - monthly or such?


#8

I’m not sure of the particulars. I would assume provisions would be made for living expenses. I don’t know how that would look, so much money/month? Or are we stuck with what is provided? Maybe someone following this thread knows how it works, feel free to chime in!


#9

I don’t think you have to liquidate everything, just most. The Medicare website (I hope) or a Social worker should have more info. A social worker at your local hospital may be a good resource, too.

For others looking to the future and considering long term care, financial planning is important. I think the rule is that money you have given away within 5 years should be available to pay for your longterm health needs. Know the rules! Obviously, rules are different in different countries.

Another option in the US would be to consider assisted living. You do have to pay for it, but it is less expensive than skilled nursing, and less restrictive. It maybe good for some. It all depends on what type of care is needed.


#10

Update
The organization responsible for in home assessments for disabled people (I’m not sure of the exact name) called today. The lady asked about 15 minutes worth of questions related to my disability and my ability. My doctor set everything up. A occupational therapist will visit next. I would assume that the US and other countries have similar organizations (social assistance groups)? I currently use a rollator and a power scooter. I may have to graduate to a power wheelchair


#11

I agree, the first person I’d seek advice from in this respect is my family doctor. He would be best placed to put me in touch with help in the local area :slightly_smiling_face: xB


#12

Depending on the results from my assessment, it may be decided that my destination would be best in a long term care facility. Although, Ontario Canada does possess a lot of services that provide in home care. Where aids come right to your home to provide various services from basic healthcare to house work.


#13

:slightly_smiling_face: The same type of help at home is available here too. My Uncle had this help 4 times a day for meals, and to assist him with washing and dressing. We coped ourselves with his laundry and shopping. Would you be able to choose between destinations/facilities, if that was decided the best option :thinking: xB


#14

Hutchy, I’m in ON too. If, for medical reasons, you need specialized or long term care this is how it’s organized: http://healthcareathome.ca/champlain/en/Getting-Care/Getting-Long-Term-Care/Eligibility-and-Admission

First line care for the elderly or disabled is at home, through CCAC, or paid for privately out of pocket. Admission to long term care homes is exclusively through CCAC.

Of course, if you can afford it, there are also retirement homes which are private institutions and for those, you pay the full market price. Prices vary greatly. If you live in a retirement home, CCAC will still provide nursing services the same as they would if you were living independently in your own home. Some private retirement homes also have enhanced care, similar to that given in provincial LTC homes, but which you pay for privately.

How things work in other countries, I really don’t know. So my answer doesn’t really help the original poster @Chas521 Sorry, Chas! You’re in NY State, and I wish I knew how care works there.

Seenie from Moderator Support


#15

Thanks Seenie, I couldn’t for the life of me remember CCAC.
This is very helpful info. Again Chas I don’t mean to take over your thread, but maybe you and others will get some value from my experience?


#16

Believe me guys, I’m not put off at all! As long as I receive an answer to my question, my thread is open to all at all times. That goes for any posts I make. :grinning:


#17

Thanks, Chas. Even though how it works here isn’t directly relevant to you, sometimes reading about these things tweaks your memory or some previous experience to help you put the pieces of your own puzzle together.

We try hard not to hijack threads, but sometimes a detour changes your view of your own issues or questions. Here’s something I found, for what it’s worth (and maybe it’s worth nothing): https://www.dfs.ny.gov/consumer/ltc/ltc_about_cost.htm

Let us know what you find out and what you figure out!

Seenie


#18

Update
Occupational therapist is coming Friday to my house to assess me and my home. She will make the necessary recommendations for assistive devices to myself, and the government coordinator. I have also got an appointment to visit in my home with a CCAC coordinator for which I have been assigned. My ultimate goal is to get in home assistance. A less desirable situation would be placement in a care facility.


#20

I had the pleasure of meeting with an OT (occupational therapist) on Friday. Took about 2 hours, a very pleasant experience. I’ll admit it helped that she was quite an attractive young woman! but most importantly very professional, knowledgeable and informative. I tried to navigate as many questions as I could.
She asked lots of questions, took lots of notes, assessed my home for disability needs in terms of grab bars and modifications etc. and she started the process to get me a power chair among other services. She didn’t think much of my 100 year old hand-me-down wheelchair, I can’t for the life of me figure out why. Maybe the lack of brakes! :grinning:
She conducted a plethora of testing with me to determine my needs around the home.
At this moment there is no indication of entering a long term care facility. We will do everything we can to utilize services that can be provided in my home. From bathing to home making, physical therapy etc. Even pedicures are covered under the Canadian (Ontario) healthcare system. She noted that my feet were neglected due to the simple fact that I cannot reach them. :smile:
She will get me a new manual wheelchair ASAP (maybe as soon as Monday) to start and an assist unit for the bath.
She made many other great suggestions (little, low cost things) that might help improve my quality of life.
In conclusion, it was a great and informative experience. The message was clear that there were many services provided in-home that could be taken advantage of in contrast with the services of a care facility. The in-home services seem to mirror those of a care facility.
Again I’m not sure how it works in other countries including the US, but in-home care seems ultimate vs. being tucked away in a care facility, to sometimes be forgotten about, risk being neglected, and possibly sacrifice decent meals! Substandard mashed potatoes out of a box do not appeal to me at all.
I recommend exhausting all available in-home services (all that are available, affordable, or free) before considering a care facility. It seems to me to be beneficial having a professional like an OT, private or publicly funded come into your home, and make recommendations vs. deciding on your own how to proceed with your life and your living situation. This may be something that is initiated by your family physician.
I hope that my experience may help answer some questions revolving around entering a long term care facility and the process even though circumstances very from country to country with regard to cost and services available. It pays to do some research into services that may be available to you.
If you celebrate the festive season, I wish you a great one!


#21

Thanks buddy! :grinning: