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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
July 17
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A MyMSTeam Member

(I am writing from the US. I know things are different in different countries.) There are many levels of long term care. We recently put my father in Assisted living, he is a Level 2. He has his own apartment with 1 bedroom, a kitchenette (refrigerator, sink and a place for a hotpot, and a small table), and living room. They do all his laundry, help him dress, stay nearby when he showers (in case he needs help), do some house cleaning. As he ages, they can do more for him, as needed, like help with meds (family does that now). They have a pharmacy there. They have a dining hall for all his meals, and some things available all day long, like coffee, tea, and toast. And they invite in performers to sing, do chair yoga, we get him bird seed so he can feed the birds and bird watch with the others, etc. You do not need to be so bad that you need a nursing home to go to asst living. If you need some help, consider it. For him, it actually makes him feel a little more independent than if he lived with a family member who had to do all his care. He tried staying with his brother, but felt weird with the constant attention. We visit him often, as do his friends. The cost at first seems high, but when we add up all his retirement income streams, it is feasible to meet the monthly rent (and he is low income), and he has Medicare to pay for doctor visit and other medical things.

In his case, he eats better now than when he lived alone, and having a dining schedule has given him a more regular sleep schedule, which is healthier.

July 18
A MyMSTeam Member

@A MyMSTeam Member I think there is certain criteria that has to be met, for instance are they mobile, can they dress themselves, can they feed themselves, use the bathroom alone , the mental capacity. A lot goes into it . You can speak to the doctors about this to see what they think. Also if this is for your loved one how do they feel about it ? Do they want a nurse to come to the home ?

July 18
MyMSTeam

Determining whether someone with MS needs long-term care is a team effort. It involves close collaboration between the person with MS, their family, and a multidisciplinary health care team. This team can include neurologists, occupational therapists, psychiatrists, social workers, and other specialists.

The level of care Show Full Answer

Determining whether someone with MS needs long-term care is a team effort. It involves close collaboration between the person with MS, their family, and a multidisciplinary health care team. This team can include neurologists, occupational therapists, psychiatrists, social workers, and other specialists.

The level of care needed is assessed based on how MS symptoms are progressing and how they impact daily life. Some key factors they look at include:

- Ability to perform daily activities like bathing, dressing, and toileting
- Mobility and fall risk
- Cognitive changes
- Emotional health, including signs of depression or anxiety
- Whether current caregivers are becoming overwhelmed or burned out
- Safety at home The National Multiple Sclerosis Society even offers a needs assessment worksheet to help identify what kind of support may be needed and how often.

As MS progresses, care needs can shift from occasional help with chores or errands to more intensive in-home nursing care, respite care, or even round-the-clock residential care. The goal is always to maximize quality of life and keep things as safe and manageable as possible.

It's worth having these conversations with your care team early, so plans can be made before a crisis point is reached.

July 17

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Miami, FL