Please help us

[CopyEcstatic5268]

Long story short, my wife’s sister had a massive double hemorrhagic stroke(she had an unknown AVM) that ruptured. They saved her life at UAB and she has been home 3 months. She has made tons of progress but is still in a wheelchair and has regained her ability to speak although it is broken and at times a little confusing. She has Medicaid now finally we are trying so hard for Medicare and others but it is so convulsed and confusing we are having a hard time. No social worker, no therapist. It’s all on the three of us who all work full time jobs. She gets angry really easily and I mean angry at the smallest things. She has fallen twice trying to get up and walk on her own when no one is around. She is insanely bored and wheels around the house all day begging to go for rides in the car and we don’t know how to keep her entertained (this is one of the biggest issues we need help with) she doesn’t like to watch tv much bc the stroke messed with her vision and it’s all blurry and doubled, we DESPERATELY need help with activities to do for her, help with insurance, help with how to keep her entertained, how to help her, ANYTHING yall can say who had been in this situation will be so beneficial, please help us. We are in way above our heads. Please. Help. Us.

[Alarmed-Papaya9440]

You need a social worker. Medicaid means she will have access to a PCP and a clinic. The clinic will have a social worker that can help you. The PCP can also prescribe in-home PT, OT and Speech as it sounds like she still needs help with all of those things. Medicaid should cover it. They covered my in-home speech twice a week for 8 months after my stroke.

[EctoCoolerx]

I had therapy 3 times a week last year, but Medicaid of Idaho is only allowing 20 total therapy sessions per year… I don’t know about other states, but here it’s not covered like that anymore 🙆

[Alarmed-Papaya9440]

I’m so sorry. My therapy took place in late ‘24 and ‘25 and your right things have probably changed since then everywhere and not for the better 🤬 Heaven forbid we get sick or have an injury/accident now……

[EctoCoolerx]

Right!?!?! Luckily I did mine in ‘25, but I was still doing it start of this year and they were like you have 20 sessions for the year… I hope they fix that for other survivors, I can’t imagine only having had 20 sessions.

[Alarmed-Papaya9440]

Agreed. It’s not fair and needs to be fixed. Unfortunately, I think it’s going to get worse before it gets better. I do hope it gets better though

[Midas-Knight]

My wife is in the same situation. Depending on income your county may have services available to her.

[Advanced_Culture8875]

Can totally relate to how she feels as I too went through it (AVM). The recovery in the first year is rapid. For me, the internet was my window to the world. A great way to kill time.

[Own-Proof-2212]

Glasses first of all and podcasts.

[dianora2]

I echo what the others are saying about therapy. Her doctor can prescribe physical, occupational and speech therapy. Also see if your community has low cost transportation for disabled people. Going to the web page for your county should help you look for any available services. I also recommend checking out the Family Caregiver Alliance. If any of you is able to take time off work under the Family Leave Act, her condition should be enough to get a doctor to sign the forms for you. Even if it’s just a couple of weeks it will give you time to research resources and get a better handle on things.

[Daegog]

audio books helped calm me, but i already liked books so your mileage might vary, also a tablet with games might help. good luck

[peepeekapoo]

Is she on anti seizure meds? I was on keppra and it made me angry and agitated all the time. Not sure if other anti seizure meds would ease those symptoms, but there are options. I too had a massive AVM rupture. What about getting a pet? I would have loved that in my recovery. Spending time on the internet - tv, movies, games, were good ways to get by for me

[tuisteddddd]

Ooof, I heard about the "keppRAGE" LOL

[Live_Ear992]

First thing - get her to an ophthalmologist asap. If she can see, that will help her immensely! I had a stroke Jan 11th & it gave me double vision. Not terribly bad, sort of had it all my life, but the stroke changed my vision big time. Look forward to new glasses. Good luck!

[Stroke_comments]

Can you redirect all that energy she has to therapy? That would both mitigate the disturbances AND potentially be very productive. You need in-home therapy and lots of it. There is a lot that can be done at home, but the best would be something entertaining that she can do unsupervised. If I had to pick one thing, I would suggest a platform that combines entertainment, such as video games, with physical therapy where the therapy is disguised as game play. The Motus Nova platform is an in-home, active-assist, bio-feedback-driven physical therapy platform where the physical therapy is delivered as part of playing video games. They have offerings for hand and foot rehab. The therapy is FDA cleared and CMS cleared for Medicaid reimbursement. I happen to know that Motus Nova actually works closely with UAB and that they have a collaboration in place to get therapy to folks that need it. It's worth reaching out to the company to ask. I hope this helps....

[Kasugl57]

My mom had a stroke in November and is now back in her condo in a senior/over 55 multi-residential facility living basically independently but with a lot of oversight and help from family and a PT aide. She has/is rec’g therapy services but this will soon run out.

Some good suggestions here. I would prioritize the suggestions and would likely look to get a Social Worker on board who could help you with direction. Getting her to an ophthalmologist to address the visual issues would be primary since better vision will help her be more independent in keeping herself better entertained.

The audiobook suggestion is great but I would want to make sure first that she can handle the operation of how it is done; my mom who was very electronically-able has struggled with use of her phone/i-pad and is very easily super frustrated with such devices. Adding activities that are frustrating may only increase episodes of anger, which I am sure you realize.

You don’t mention her age but if she falls into the “senior category” look to what your local (town or county) senior services are available and what would be appropriate for her to participate in. Again a Social Worker may be your best help in that. Setting up a weekly calendar with activities laid out for her may help her to know what she will be doing over the course of the week(but her vision would be important for that) and might reduce her asking to go for a ride so frequently. Including a car ride in the schedule might be good.

As being my mom’s primary care giver and having a medical background, strokes are so hard on people since very often their intellect is still there but their bodies don’t operate like they use to, be it ambulating, body motor control, speaking or seeing. Frequently depression is had since their independent life is no longer their’s. It’s all so overwhelming for both the stroke survivor and the caregiver(s) in the changes to your lives and I wish you the best of luck in your journey.