Hey Wendy,
My name is Merl I’m a member of the modsupport team here on Ben’s Friends.
In a former life I used to work in the community services field. My role was teaching people with disabilities independent living skills. That was the title of the role but networking with other agencies to obtain the best outcome for my clients was a must.
Now, I’m in Australia and our systems work a little differently, but, here’s how things work here.
Alzheimers is considered to be an illness of the aged. Aged care has it’s own government dept but the funding for services has to cover the whole range of services, to a large portion of the population. So the funding is stretched fairly thin.
A brain aneurysm is considered a health issue and a ruptured annie is considered to be a brain injury. This health funding is a bigger pool of money and specific health conditions get their own specific funding. Therefore, it isn’t spread/stretched as thin as aged care funding. There is also specific brain injury and disability services, so instead of having one pool of funds that everybody is trying to grab their share of, like aged care funding, there are other sources of funds which can be accessed, depending on certain criteria.
My recommendation here would be to contact Brain Injury Association of America | BIAA (biausa.org). Explain your situation and see what they suggest. I wouldn’t be mentioning Alzheimers, but rather the annie rupture as the primary issue. Alzheimers is automatically aged care. Brain injury can happen at any age, so it’s health.
Now, it may be that they say they are the wrong agency. Then ask “who’s the right agency then?”
They may say that due to age, it must be an aged care service, but they should have their own contacts or services that may be able to help to navigate the systems, because trying to get into their systems can be a real minefield sometimes.
I also STRONGLY agree with Moltroub in regard to a dietitian.
I can see that happening in an assisted living facility. I don’t know how you feel about nursing homes but it might be a better option since they have a medical staff. It sounds like if the not eating situation goes on much longer, the assisted living center will have no choice but decide they can’t handle her and suggest a nursing home. Do they have her in a dementia section? Other than the eating situation how well is she able to assist in her living?
Thank you EVERYONE!! It is SUCH a huge help!! This is all still very new to us. She is only 3 1/2 months out from her rupture. Finding a place that will
accept her has been beyond frustrating. The Assisted Living place she is at right now was one of the only places that would take her AND was the best out of the ones vetted by family. They don’t take Medicare or Medicaid at this facility. So…I’m not sure if the food and nutrition law applies to them???
Either way…they can do better. These are photos of her dinners for the past two nights. One morning all she had for breakfast was a grilled cheese sandwich. The family did have a meeting with the facility yesterday to go over food issues. So we hope that things are going to be solved. We shall see. The other issue is the medications she needs. She doesn’t want to take them so they leave with the meds and she doesn’t get them. Maybe that is the rule. But some of these are important to her not having seizures and the like.
It’s a learning curve, I’m sure. But goodness! I feel bad for people that have no one to advocate for them!
Many thanks to you all!! -Wendy
It’s hard to see around the corners when it’s all new and unexpected. Your doing a great job. She’s lucky that she has you. Best of luck to you, all of your family and especially your sister. I was still in ICU at 3-1/2 weeks and then I was sent to rehab for about 2 weeks after release. They only let me go home after I signed an agreement to continue my rehab locally. First thing I did when I went outside to walk at home was have a seizure, fall off the back porch and crush my wrist. I told them at the ER I really wasn’t trying to get frequent flyer points.
Check with the State Department of Health and Human Services, they run the show for a lot of things. Assisted living is one of them. I’m sorry, I cannot remember what State she is in. For instance here in NC, I would type in my search as NCDHHS. See if you can do that for her State. If you have problems, let me know and I’ll see what I can find.
For her refusing medication, she most likely has that right no matter if she is competent or not. It is covered under both Federal and State law and someone in the family or your sister should have been given her patient rights. If not, have one of your family members get them from other the front desk or the Social Worker if they have one. I strongly recall a law passed in the ‘70’s that allowed any patient to refuse part or all of their medication as I worked at a treatment facility for the emotionally disturbed. It was a half way house between hospitalization and the real world. I didn’t think her math was correct in converting to his liquid meds so I called his Psychiatrist. The psychiatrist told me to tell a patient to refuse half his meds and then changed him from liquid to pill form. The RN was afraid of the patient and had him zoned out, literally. She had quadrupled his meds. I also tried it myself when in NSICU with the heparin shots. Did I need them? Absolutely as they prevent blood clots. Did I like them? Heck no, they hurt like the dickens and I didn’t want any more pain in an already painful body. I told Kenna I’m refusing them every other day when she patiently explained why I needed those shots. I told her there was a law that allowed me to do so. Kenna, a very wonderful RN by the way, just gave me a look of shear disappointment. She was aware of my patient rights and because of those, she also had to explain why I needed them. I’m unsure if it was Catholic guilt or reminiscent of my Dad’s looks, but I folded and let her give me those dang shots. She is Baptist, so I guess the Catholics don’t have the corner market on guilt. whomever has her Medical power of attorney has the right to look at her charts and the nurse should be documenting that your sister refused the medication and that explanation was provided on why she needs them. I believe but am not sure that an explanation needs to be provided each time she refuses. I just remember the RNs doing that in ICU with a few patients.
That food does not look palatable, I’m pretty sure they could not have gotten me to eat it. Your family may need to send pictures of her meals to her State DHHS. Be cautious as the facility will get a bit upset so do it anonymously if they need to. They also might check with the County Adult Protection Services where she is at. In NC, APS investigates facilities. DHHS should have reporter’s rights and here in NC it takes a Judge to breach our General Statute for reporters. In all the years as a SW, I never heard a Judge order the release of the reporter’s name. I did hear many reporters admit on the stand they were the reporter and then became infuriated that their identity was released…most didn’t understand they were the ones who released their identity.
whomever has her Medical power of attorney has the right to look at her charts and the nurse should be documenting that your sister refused the medication and that explanation was provided on why she needs them. I believe but am not sure that an explanation needs to be provided each time she refuses. I just remember the RNs doing that in ICU with a few patients.