Independent/Assisted Living

[dm0329]

Happy Fourth, All!

I just turned 55 this year, and switched from Avonex (my long-time companion for 25 years) to Aubagio. I went on SSDI at age 45, and although my MRI's are stable, I have acquired many black holes and lesions having been dx at age 25 (started Avonex at age 28 to age 55).

I have been told I'm secondary progressive"ish" LOL. I can mostly maintain independent living, yet my fatigue and cog fog is getting worse and my bladder and bowels are starting to join the party too. HAHAHA

My only sibling (brother has requested that "I leave him alone" as I found out he has been talking with my next-door neighbor and my only real friend behind my back for several months. This has resulted in both my neighbor and friend to request (in writing) that I stop all communications.

To which I agreed, in writing, but had an "informal cease and desist request" to my neighbor whose sump pump has been flooding my yard and basement for many years. I didn't realize that "all that water in his yard" was from a sump pump as I am a downward slope neighbor. But, I put in writing my request for him to pump into the street and not his yard? It's only been two weeks, but I don't know what else to do?

Anyway, I live alone in my family home that my brother signed his 50% over to me in 2012. I cannot keep up this home and I feel me slowly slipping. I have low vision and have "lost my glasses" a million times just this past month even though I keep everything in the same place. Ugh!

I'm writing to my fellow MSers to please help me navigate what steps I should be taking to look into "selling this house" and moving into an independent or assisted living space. I still look so good, but heck, I think it may be time to go. Maybe spending the next twenty years alone, depressed and elsewhere. The isolation and lack of support is heartbreaking.

I worked as long as I could. I am in Pennsylvania and an Specific Low Income Medicare Beneficiary. I don't get much assistance, and have no idea where to start? So, I'm starting with my MS World. What tips and or advice can you provide.

Thank you, as always!

[loopey]

I am sorry I don't have any advice since I live out of the country but I wanted you to know that I care how this turns out for you. Please keep us posted. I hope you will get some good suggestions here.

[KoKo]

Hello dm!

I think that your first step might be to explore Pennsylvania's Medicare and Medicaid rules / regulations regarding Assisted Living. That way you'll have an idea about how your Assisted Living might need to be funded.

I am in Assisted Living (Level 2, not Independent).

When I moved in here, my anxiety level dropped considerably.

I had been living alone in an apartment, with my sisters and brother-in-laws coming over to help me on a regular basis.

As my physical impairments increased, so did my anxiety level, as I would get myself into predicaments that required me to call them to come over to help me more and more often.

The decision to move into a place with 24/7 assistance available wasn't too difficult.

I feel much calmer, safe and secure, with caring assistants nearby all the time.

Good luck with your search dm!

[Jules A]

I'm sorry you don't have any support but think you are brave and wise to accept it is time to seek a more therapeutic living arrangement. It makes me sad to think of people staunchly refusing to leave a house despite the isolation, expense and unsafe environment.

The ability to socialize in an assisted living facility is worth its weight in gold. Best wishes as you navigate this exciting new chapter of your life.

[Seasha]

I, too, am sorry that you don't have the support you need. It must be very frustrating. I'm not sure if the following will help you, but maybe it's a start. Good luck to you!


Medicaid and Assisted Living
As of 2021, Medicaid pays for some of the cost of assisted living in 30+ states, as well as the District of Columbia.


Financial assistance from Medicaid for assisted living comes through several different types of Medicaid programs. The most common of which are Medicaid Waivers, also called Home and Community Based Services (HCBS) Waivers and 1915(c) Waivers. The number of states offering these waivers has increased rapidly in recent years, and assistance will possibly be available nationwide in the near future. However, some states are moving to a Medicaid managed care model and away from Medicaid Waivers. These states continue to provide the same level of benefits for assisted living, but do so as part of their managed care programs instead of through waivers. Another type of Medicaid program is referred to as State Plan Personal Care or Personal Assistance Services. This is a regular Medicaid benefit (an entitlement, meaning anyone who is eligible to receive services is able to do so) that pays for personal care and allows beneficiaries to receive that care in assisted living communities.

States are increasing the level of assistance they offer to persons in assisted living because this living environment is less expensive than skilled nursing homes, and therefore, less costly to the state. Having said that, Medicaid’s assisted living benefits are very inconsistent. For example, in some states, Medicaid pays for only personal care services in assisted living. In other states, the size of the community is regulated. Some states limit size to small, adult foster care-type homes, while other states limit assisted living to larger residences serving twelve or more persons. Still, other states have no regulations at all related to the number of residents. Another variation in policy relates to room and board. While Medicaid does not pay for room and board, states have found ways to assist. For instance, some states limit the maximum amount that can be charged or provide non-Medicaid assistance to Medicaid-eligible persons.

A complete list of states whose Medicaid programs help with the cost of assisted living and their eligibility requirements is available here. One can also learn more about qualifying for Medicaid assistance here. https://www.payingforseniorcare.com/...ssisted-living


AND THIS: https://www.payingforseniorcare.com/...ssisted-living

[palmtree]

You can start by calling the Public Assistance helpline in your state. They can explain to you how to go about it. I just spoke with the person who is handling my waiver yesterday and she confirmed to me that waiver covers assisted living. They have an in-home caregiver program, too.

another resource is to call your local senior center and ask to see a lawyer. The lawyer can help you navigate selling the house and Medicaid. He might be able to do something about that sump pump neighbor, too. A last resort could be adult protective services. They will help find you placement in an assisted living.

If you apply for Medicaid and are approved you can ask them how to get on the waiting list for waiver(that is if it is offered where you are). Medicare doesn’t cover long term care of any kind, as you probably know.

That is a shame your brother has been so disrespectful and unkind. It’s one thing to have to fend for yourself and another to have to defend yourself. That can be exhausting when you are not 100% physically. My experience since I got diagnosed has been that some people consider me less of a person and think MS is a mental illness or Alzheimer’s. It’s neither. If they try to get away with things leaving me feeling vulnerable.

I, personally, am trying to stay out in the world as long as I can even though I am bumbling around and never wear my glasses. I have someone come help 3 days a week which helps with cleaning and I don’t feel so isolated.

I wonder if there is another solution besides selling your home and going to a CCRC. From what you tell me, your brother and these other people are making your life difficult, not your MS. If your environment were different do you still think you would want to go to assisted living? You own your own home. That is pretty awesome.

You could take out a reverse mortgage and use the money to pay for wonderful loving caregivers. I find if someone comes over every day I’m happy. But I am sort of a hermit. You could also sell the house and find a nice apartment way access town to rent and hire caregivers. Let the apartment managers worry about maintenance. Then you would have different neighbors and dump those “friends”.

What I think is that, before you commit to a major change, I would see a councilor or at least a social worker to try to heal the feelings of helplessness that you must feel when people have been so cruel. If you decide assisted living is what you want you will go in with clarity. I would hate to see anyone going because they are running away from something.

[Jules A]

I, too, am sorry that you don't have the support you need. It must be very frustrating. I'm not sure if the following will help you, but maybe it's a start. Good luck to you!


Medicaid and Assisted Living
As of 2021, Medicaid pays for some of the cost of assisted living in 30+ states, as well as the District of Columbia.


Financial assistance from Medicaid for assisted living comes through several different types of Medicaid programs. The most common of which are Medicaid Waivers, also called Home and Community Based Services (HCBS) Waivers and 1915(c) Waivers. The number of states offering these waivers has increased rapidly in recent years, and assistance will possibly be available nationwide in the near future. However, some states are moving to a Medicaid managed care model and away from Medicaid Waivers. These states continue to provide the same level of benefits for assisted living, but do so as part of their managed care programs instead of through waivers. Another type of Medicaid program is referred to as State Plan Personal Care or Personal Assistance Services. This is a regular Medicaid benefit (an entitlement, meaning anyone who is eligible to receive services is able to do so) that pays for personal care and allows beneficiaries to receive that care in assisted living communities.

States are increasing the level of assistance they offer to persons in assisted living because this living environment is less expensive than skilled nursing homes, and therefore, less costly to the state. Having said that, Medicaid’s assisted living benefits are very inconsistent. For example, in some states, Medicaid pays for only personal care services in assisted living. In other states, the size of the community is regulated. Some states limit size to small, adult foster care-type homes, while other states limit assisted living to larger residences serving twelve or more persons. Still, other states have no regulations at all related to the number of residents. Another variation in policy relates to room and board. While Medicaid does not pay for room and board, states have found ways to assist. For instance, some states limit the maximum amount that can be charged or provide non-Medicaid assistance to Medicaid-eligible persons.

A complete list of states whose Medicaid programs help with the cost of assisted living and their eligibility requirements is available here. One can also learn more about qualifying for Medicaid assistance here. https://www.payingforseniorcare.com/...ssisted-living


AND THIS: https://www.payingforseniorcare.com/...ssisted-living

Excellent information, thanks Seasha. It is sad and frustrating to think of the red tape so many have to go through to secure stable housing and care. And when elderly or disabled that makes navigating the system even more difficult. Our country gets a failing grade in my opinion when it comes to elder care.