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How can we explain reality to her? My mom is on week 4 of post-stroke rehab. She has progressed, but she still can't walk or use her left arm. Her cognitive abilities are about 98 percent intact, so she is not demented. Even before the stroke, she was in major denial about being old and unable to care for herself in some ways. She lived alone and she seems to think she's going to go back to living alone. When I tell her she is going to need 24/7 care for the foreseeable future, she tells me that's ridiculous. When I point out that she can't walk or use her left (dominant) arm, she insists she will be able to recover all of that and live at home by herself. Furthermore, she needs 2 people or a lift to get her from bed to wheelchair.

I find this really upsetting, because I, as her only child, am going to have to either put her in a "home" or get her full time care in her own home. She is not going to accept either one of these options. I hate to feel like I'm forcing this on her and taking away her independence, but there's no other choice. How have you dealt with this siituation?

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I feel so bad for your mother, xina. I feel bad for you, too. I know it makes you feel crazy and stressed when she says she is going home. I do wonder how rehab is handling it. Legally they can't keep a person who wants to leave. But if there is no one who would help her leave, she is rather stuck. I guess maybe the best thing is to keep saying "when you get better." Maybe then it will keep hope in her so she will keep trying. ((((Xina))))
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Today my mom told me she is going home later. She's going to hail a taxi and she will be just fine alone at home. She is nowhere near going home, and I'll be surprised if she ever does, given that right now she needs 2 people to transfer her. She is in touch with reality on all levels except regarding her abilities, so it's really upsetting and confusing. Nothing sinks in. Just needed to vent. I think we are meeting with the PT/OT/SW later this week.
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Medicare will only pay for short visits in most cases a few hours a week. If this woman can't transfer by herself it is obvious that she will need 24/7 care. That is much different from what medicare can supply which would make her inelligable for medicare paid home care.
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If your mom's husband was a veteran there is a program called Aid and Attendance that will pay the spouse of a deceased veteran, who served during a time of war, up to 1,200.00 per month for home care. Although this is not enough to cover all of the costs it will stretch her dollars so she can stay at home longer. you can go to www.veteranaid.org for a full explanation of the benefit.
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Thanks, Jessie. My mom does have a decent chunk of savings, though nothing like what she "should" have at her age. I hate the thought of blowing through all of that, which would happen in 2-3 years with 24/7 care. But that's the only way to get Medicaid, I guess. UGH. I'll check out PACE.
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Xina, Medicare will pay for a limited amount of home care, up to the goals set by the therapists. I would think she could benefit from home nursing as well.

It's an entirely different environment for therapy at home, more relaxed, and the therapists are often more experienced with older people in their own homes. The activities and exercises are easier as well.

You could prepare her focusing on the fact that they will help her find new ways to adapt to her own home, which they will do if they're good.

I'm surprised no one told you that Medicare would pay for limited home care.

And sometimes that's enough to spark and maintain motivation, while allowing the person to be more comfortable in his/her own surroundings.

There is one caveat though; too many people too close together can cause fatigue. Through experience, we limited home care to no more than 2 people daily.
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I see PACE is also available to people on Medicare alone, but can be adapted to Medicaid if needed.
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xina, you can look into getting Medicaid for your mother when her money runs out. If she is going to be in a facility, normal Medicaid could help you. If she is at home, there is a community-based program Medicaid called PACE that you may find helpful. PACE has specific guidelines. I'm not overly familiar with it, but it does appear to be a good program for low-income senior who want to age in place.
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Have a sit down with the discharge planner and social worker and discuss emergency guardianship (court order). Mom's medicare will cover 100 days of rehab, but only if she shows progress each week.
Now is the time to find a trustworthy attorney to advise you.
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Thanks for all the advice. My mind is reeling at the moment, wondering how on Earth we will afford the expense of 24/7 care either at home or in a facility.
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How old is your mom? It can take months to regain movement after a stroke and PT at home only 2x a week doesn't sound like enough

If you think you want to try and take her home at some point - which I doubt would happen if she requires two caregivers to transfer her then might you look for a caregiver now to spend a couple of hours a day with her while she's in rehab?

This way you can observe or get feedback from the Cg if your mom is going to accept a stranger into her home - they are clever when they want out and will agree to anything but then once back on their own turf they will kick the caregiver out

Since you're only on week 4 of rehab you will likely get Medicare to partially pay fora few more weeks if she's making progress with PT - if so keep her there awhile until you can make a plan

It takes a very willing easy going person to stay at home with strangers in their house taking over - my mm wouldn't accept it and as a result is now in a facility
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Rehab hospital staff deal with this on a daily basis and appreciate when relative shows up for conferences, training and support.

Lean heavily on them. They also offer to place patients at the proper facility, since they have had full access to documentation, insurance, financials, etc.

M88
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The more you try to get her to accept her limitations, the more she's likely to dig in her heels and defend her independence. It's got to be a major threat and blow to her self esteem, so try another approach.

Don't challenge her perception of her ability, but focus on the fact that you want to help her because of all she's done for you (I realize this may be a delicate approach and considered inappropriate by some posters, because there is also a train of thought that we really don't owe our parents as much as they feel we do). And segue into the discussion that finding assistance for her is your way of helping.

I agree to have the doctors break the bad news to her; they can take the heat, but hopefully will be as compassionate as possible.

I like Jessie's suggestion of couching the bad news in terms of needing it only until she gets well again.

Have in mind ways you can build up her confidence and allow her to still feel good about herself. Most people (including me!) have trouble accepting that our abilities are declining to the point that we can't care for ourselves.
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I agree with Jeanne and Mulata. Her doctors can let her know that she'll need help. Maybe you can make it more palatable to her by saying that she will need it until she gets better. She won't see it as so final that way. Do you have a facility in mind for her or do you plan to hire at-home care? I am sorry that her stroke was so serious. I know it is a shock to her going from independent to dependence so quickly. Do her doctors think she'll walk again one day?
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I agree at 100% with Jeanne's comment.

When is the discharge scheduled for?

There is a doctor, discharge planner (case manager of the rehab facility), reports that state the likelihood of mom going home or not.

They do discuss this with the patient, and preferably, when they see the need of a patient with continued issues, which will absolutely require assistance at any level. They hope to meet with person or persons that will care for patient.
When this is not possible, due to their demands, (lift, transfers, meds, mobility), they start looking for a PLACE TO SEND THEM TO.
Has anyone spoken to you about this yet, at the facility?
Ask them to help, for the love of God.

M88
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As far as possible, can you have others explain the facts of life to her? Can the physical therapist and the occupational therapist and the discharge planner explain to her what has to be in place for her safety and comfort once she leaves rehab? It won't please her any better but maybe she'd take it more seriously from them.
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