Thank you for the add. It’s been tough, it’s been horrible, it’s been eye-opening but mostly I miss my sister. Who she is now is not who she was, and all these people who interact with her on a daily basis have no idea how funny and smart and sassy she was. I guess what I need the most is an understanding of how to make it better - how to make her better - and how to heal myself. Would love some input from family care givers and survivors! Blessings to all of you!
It sounds like you’re doing amazing things to look after your sister. The only way in which I feel I can offer you support at the moment is to reflect that back to you: you’re doing amazing things. I hope you’re doing ok within yourself, too. Being a carer and balancing that with all of the rest of life is probably the most difficult thing to do (and it’s always for those closest to us). I know you don’t want your sister in a care home but really, to make this sustainable for you, that’s where she needs to be just now.
I’ve watched a number of people caring for loved ones through illness and one of the greatest dangers is that it becomes so all-consuming that it takes them down. The best example I can give is my mum’s partner, who dedicated himself so much to his wife that he forgot himself and ruined his own health in looking after her.
I think of it as being like they tell you on an aircraft, that if the normal oxygen supply should fail, to fit your own mask before attending to others. This is still true when caring for your sister: it is much more important to ensure you are eating, drinking, resting well and able to attend to her than if you’re not living sustainably. Recovery from a stroke can take years, so you need to think long term.
Now, it sounds like you’re doing that, so that’s fantastic. Like I say, I think you’re doing amazing.
Very best wishes,
As you may notice, I’ve moved your reply to its own topic. I’m hoping other Caregivers aka careers, share their experience. Caregivers have a vastly different experience than those of us who’ve ruptured. I think they have more fear. I also feel that some get a form of PTSD from their experience.
As someone who has ruptured, I can share the journey isn’t the same for everyone but what is most similar is that it takes an incredibly long time to heal. My personality has changed a good bit - I talk way too much now among some other quirks. BH doesn’t mind and the neurosurgeon likes me talking so she won’t shut off the chatter box. I had no emotions for about 4 years I think it was and although I k ew I should react a certain way, it just didn’t come to me how to. Because of having no affect, I also spoke robotically.
Between repair procedures 2 and 3, I had to become my elderly parents Caregiver. There was one point when my Neurosurgeon grounded me from them for three weeks because it was effecting my health in a very bad way. Please take time for yourself. Do something you love to do and not focus all your energy on your sister’s journey. As @DickD mentions, you will be better for it. If you fell better, you will be able to do better.
I was fortunate in that I was a CNA back in the day working my way through university. I knew to visit my parents went they went into facilities at different times throughout the day. That in itself is exhausting and chores get put on hold which can add to some build up of stress. I was also fortunate that as a CPS Social Worker, I knew a lot of the APS SWs. I knew which facilities in our county were good and which ones weren’t even close. I had to learn Medicare rules so I could make sure my parents were receiving the proper treatment and the facilities were doing what they were supposed to. I had to get on hospitals for not documenting, facility for Mom not following the rules but wanting her to stay the full length of what Medicare will pay 100% for, and Dad’s facility demanded more of my attention as it is well known to be the worse place to go. He refused to move to a better facility. What I should have done was make more use of the Medicare Ombudsman. Their number is supposed to be posted where everyone can see it. In the hospital, it was behind a door in the waiting room. At Dad’s facility it was posted behind a door in the front lobby which was on the other side of the rather large place and not used to access his unit, Mom’s facility had it posted also in the front lobby but sort of behind a plant. Though I never called the Ombudsman, hindsight says I should have as well as reported the facilities. Mom fell in the rehab and wasn’t found for at least two or more hours, a visitor heard her. The one thing I did appreciate with Dad’s facility is the SW actually did the meetings they were supposed to do, Mom’s didn’t. But those meetings are fast, maybe 15 minutes and you need to keep a list of concerns and questions so they can address them in the short amount of time allotted. The SW at Dad’s was willing to work with us and lived up to what she said. So when there was an issue with cold food she had the Dietician over the kitchen meet with us. He insisted the food was at the proper temperature when it reached Dad’s room. I threatened to bring my instant read Thermapen. We were walking to the elevator and heard some laughter and joking around for 15 minutes. The Dietician was madder than a hatter. It wasn’t the food left the kitchen cold, it was the worker not getting it to the patients fast enough. Problem solved. This is a place to start - Quality, Safety & Oversight - Certification & Compliance | CMS
It’s a lot to read and you may just need to do a search on things you want to know or go to the manuals. You may need to understand the Federal laws Social Security Act Title XVIII and here Social Security Act §1900. The State your sister is in may have their own rules so you will need to look up the General Statutes for that State
If your sister is married, her spouse can have access to all her records, if she is single and doesn’t have anything legal for someone to have Medical or Health Care Power of Attorney, you might want to ask Adult Protective Services in the County she has residence in to help out, but you may have to just hire a good Family Law Attorney. They cannot recommend one per se, but they can tell you who they would hire in your situation. Something like “ who would you hire if you were dealing with a family member…”. In NC, this was considered perfectly acceptable by the DSS attorney in our county but giving a general recommendation was cause for a lawsuit.
Sorry this became a novel, but Caregivers are dear to my heart. Remember to take a few hours each week at least to do something you love to do!
Hello and God bless! From the other responses, it sounds as though your sister suffered a stroke. From a caregiver standpoint as I’m currently caring for my mother post-cerebral aneurysm clipping, we must take care of ourselves first and foremost. We learn along the way how to do this & utilize all possible resources.
My mother suffers from stroke like symptoms. We did physical and speech therapy twice a week for 12 weeks- this helped tremendously! I do not believe Medicare set a limit on the number of visits allowed. The facility was 2 hours away or we would have gone 3x/week. Speech therapy, consisting of cognitive based homework, must be done in a daily basis if one can handle it and when the time is right.
Please read on neuroplasticity. Please look to the Area Agency on Aging for assistance as well as home based therapies and/or a facility outpatient therapy. A facility with a focus on outpatient therapy may be a great idea as the therapy is done many times throughout the day and strenuous.
Take care dear!
Greetingz and welcome to our group. I am a survivor of aneurysm and stroke. I relate to all you shared. There is a informative video on YouTube about “Flooding” describing the many changes which occur after traumatic brain injury. I don’t remember how I came across it, but it helped me as well as my son, to understand mostly everything that occurred after my surgeries, and my continued recovery. I hope you find it helpful in learning how to care for your sister as well as yourself as a caregiver. This group is amazing and has helped me along my journey. Please reach out to all here, as you will have much support. Keeping you and your sister in my prayers, trusting all will be well~
Hi, my aunt had a stroke from bleeding in her brain, I found her leaning over- called and ambulance when she didn’t respond to me. She spent 3 months in the hospital. Unfortunately it effected her so bad- she refused to take speech therapy and could say only 3-4 words! I cared for her with taking my daughter- than 12. I had to make her go to her appointments! The stroke made her difficult, not her fault- I stayed with her 4 days and had to hire a caregiver to help because I was totally exhausted, she later lost use of her kidney’s and was on dialysis- very hard! She’d stop her medication- would hide it so I had to start watching her take it! It does change people and caregivers need help! I spent most my life taking care of my grandma, my mother, and my dad and older sister too. Than December 2021 I had a cranial surgery frontal lobe to remove 3 benign tumors- took me 8 long weeks to get done energy back- I can see it change my personality too! I’m getting ready in about a month to have another brain surgery near my brain stem- I have a tumor leaning on it. It’s deeper and has more risk but I’m ready to put it behind me, than take radiation for what the dr won’t be able to get- I’m hoping my personality isn’t worse after! I’m praying you at least get 2-3 days of help! It’s really hard to take care of others- I worked at our family business also when my dad was sick- I’d run up 3 times during work and after work til 11 . I became so exhausted and lost 20! Pounds I didn’t need too! Was totally wiped out -,crying and praying to Gid is the only thing that got me through- I felt otherwise I’d fall in my face ! Praying for you and your sis
I found two that you might be talking about, there’s this one Flooding - Becoming Overwhelmed After Brain Injury - YouTube. And then there’s this one I had to quickly stop watching and it may be the right one (There are warnings for us who experience overstimulation not to watch it for good reason) Flooding brain injury - YouTube
Thank you everyone for the kind words. I do understand that I need to take care of myself, but as you all know, this is very difficult to do. I feel as if she/we are being taken advantage of in her healthcare - no one has spoken to us about how to get her out, moving her home, the therapies she will need. I am figuring all this out on my own. While our ultimate goal is to get her “home” (wherever that may end up being), I do realize it will never be by herself. There are just so many decisions to be made right now - another facility? Pay privately? Which facility? Home? How to spend her money before the government takes it…and most importantly, what is best for her? Yes, her personality has changed and she continues to have no use of the left side of her body. I am overwhelmed, and needing hope for her recovery and guidance on how to move forward. Bless you all for your kind words!
Is she on Medicare by now, or Medicaid? If so, the Doctor who works for the facility has to put the expected length of stay in their initial assessment and I believe it has to be completed in 24 hours. I believe, can’t remember, that my parent’s Medicare paid in full the first 21 days and then it would start being reduced
If she is on private pay insurance call the customer help line and ask them what their parameters are for expected length of stay.
Trying to avoid paying the State their share is difficult to say the least. Does she have something set up in a trust? Are you named on a legal document as her POA and Medical POA? Does she own her own home? If so, is there somebody else’s name on it? Does she have children or a spouse? How old is she? If she is over 55 you might try talking to an attorney who specializes in Elder Law.
I realize these are a lot of personal questions that you may not want to answer here as everyone on the internet can read what we write. If you choose to do so, our members can better provide their experience. I’m not an attorney by any means, but if you’re trying to get guardianship, you will need to look up IN law on it
here’s a start on understanding https://www.in.gov/idr/sdm/files/IDR-Guardianship-Fact-Sheet-21OCT19-FINAL.pdf
These people might help you https://www.indianadisabilityresourcefinder.org/
We are in the process of trying to get her on Medicaid - she is not old enough for Medicare. We found out she has 2 401ks that we must cash out immediately or she will not qualify. I think we will use them (if I can ever get them) towards a better interim place - where she is is simply awful. Medicaid wants her house, her car, and any assets she has, and I’m trying to wrap my brain around how the government can take her RETIREMENT? I am her POA and guardian and never seem to stop working to make it better for her all while she rots in a craphole. OK, I’m sorry, I get so overwhelmed. I have reached out to the social worker where she is now, no response, as well as two state agencies for help but no one has returned my calls. I will keep trying. spoke with the attorney yesterday and hopefully we can get this moving so she can get what she needs.
I apologize in advance, but that sucks! Unfortunately for the patient (and families) the State, any State can and will take their share in the USA. Decades ago we had a friend whose mother in her early 50’s had an ischemic stroke that put her in long term care. They didn’t know about COBRA, we didn’t either three decades ago. Once the insurance benefits stopped, the State Auditor came in to the home she owned and appraised everything. I do mean everything. They had to sell it all through an auction except the house which was put on the market. Quit claim wasn’t an option here in NC as she would have had to do it five years prior to the stroke. Check with the attorney on that as your sister is still talking, his mother wasn’t. Quit claim is a nominal amount of money, but it might protect some of her assets as the house would be put in your name and you could sell it as you pleased.
The government which relates to the taxpayers, has to pay the bill for her stay at the facility. So they can and will claim everything to ease the financial burden. How things are billed is phenomenal in the cost of what they’re billing for. Back in the late ‘80’s we used to get a complete read out from a hospital stay down to the last bandaid. I remember for one laparoscopy the hospital charged my insurance $7.00 for a flippin bandaid (plaster for UK folks). I told the OB/GYN she should have told me and I would have bought a large box of them for the hospital and still come out ahead. But for any facility, hospital, rehab, long term care, there are many people involved and they all like to have their salary paid as well as upkeep of the facility etc. it’s a lot of accounting to understand to say the least.
Hopefully you have spoken with a disability attorney by now. They specialize in obtaining disability and are only awarded a small % of the back pay when and if disability is approved. For me it was well over two years to be approved. We had been paying for private insurance from the time my COBRA ran out. I had to wait for all my benefits to run out, etc and then reapply. I didn’t listen to the women at the SS office and should have hired a disability attorney immediately the first time I applied like they told me to. Besides our age, our educational level is looked at. There are check boxes the folks at SS have to click on. Our disability attorney said the younger and higher educated we are is against us in receiving disability. He said if I was just a laborer with no education, I may have had received it. He later told us that there were no boxes for an SAH, so they were following ischemic stroke guidelines probably. In the beginning he said something like a two year wait for my case to be heard. It’s hard not to have an income. I was a local government employee and due to my SAH and length of time with the agency, I did receive State employees disability which paid for my private pay insurance. When we went back about a year later, the disability attorney said it would be another 21 months due to the back log. I became really upset and called Senator Tillis office up in D.C. I spoke to his aide that deals with health care. Fortunately he remembered me and looked into my case. To the astonishment of the attorney, I received full disability in maybe two weeks without a hearing. So my advice of course is to call one of your Senators up in D.C.
If the State Auditor isn’t involved yet, go to her home and remove family heirlooms, antiques, jewelry. He or she can’t count what isn’t there. I would advise against removing everything. Talk to your attorney about this as I’m not one and it’s just what my friends experienced. They were allowed to keep family photos but not all the frames.
If the SW at the facility isn’t returning calls, call the Director and ask what their response time is for returned calls. I found these standards for SW in LTCF’s. https://www.socialworkers.org/LinkClick.aspx?fileticket=cwW7lzBfYxg%3D&portalid=0 You can look to see if the National Association of Social Workers has updated these. If you know the letters behind the SW’s name, you could figure out what they are bound by the license or certificate to do to keep up their qualifications.
This is a link to the Federal Regs https://www.govinfo.gov/content/pkg/FR-2016-10-04/pdf/2016-23503.pdf. All States must follow them, you may have to do a bit more research. All facilities follow Medicare/Medicaid rules for every patient they don’t want to lose this benefit or be fined. At facilities that provide poor care fines are common place and it results in continued hiring of poor employees unfortunately as the ones who are good can go to a better facility and make more money for the same work in my opinion.
Should you feel the facility is providing sub level care, write down your concerns so they’re all in a nice list and you won’t forget any of them. Note everything from the quality and temperature of food, if she receives the required utensils or assistance to eat, physical therapy, clean bed linens, etc. Try hard not to leave anything out. Document the time and day you have called the Social Worker. Please remember when you call the SW to leave a message. (As a retired SW in a different field, I cannot begin to count the times irate folks called and didn’t leave a message. Our Director required that all calls be returned in 24 hours during the work week. If we were out we needed to have our answering machine message stating when we would be back for vacation, holidays and weekends. But our Director was a stickler for customer service, he expected us to do our work in a professional manner and rightly so. Under his guidance, we were often followed by others across the US for our innovative practice. Directors make all the difference for everyone who works under them or are served within that umbrella.)
Once you have your concerns listed make a call to the Adult Protective Services. If they accept the concerns for investigation, they will go out and check them. Make sure you provide your name and contact information. This is protected and cannot be released to the facility. FSSA: Aging Home: Adult Protective Services
APS has really knowledgeable folks in our county, I hope yours has the same. When you provide your name and contact information you will receive a letter saying if the report is accepted or not. If it’s accepted, they may give the SW’s name and contact info. If it’s unaccepted, they will most likely provide the IN General Statutes (GS) number on why it doesn’t. Where I worked we would put something mundane that no one ever looked up such as under NCGS#…the information provided does not rise to the level of an interaction. Thank you for sharing your concerns…. If you get this type of letter, look up the GS and learn it.
I realize I’m tasking you with an enormous amount of work that you may find stressful, make a list and do one thing at a time.
I think I’ve reached the end of my suggestions…hopefully others can add to this with their experience in LTFs (Long Term Facility)
I in know way meant to share something that would be detrimental for anyone to view. Having many of the issues in the video I suggested, helped my loved ones understand what I continually deal with. My intent was to hopefully have it be helpful for those experiencing same.
I think I would have liked it if I could have watched it, I really do! You’ve never lead anyone down the wrong path here in our group. Your experience and wisdom has helped many over the years. I, for one, have shared the link to my family and friends.
I think for anyone who doesn’t have overstimulation issues to the extent that they still get wonky and for any family or friends it would be a great way for them to see what we go through when we’ve ruptured. I just wanted to warn folks, as the video does. I believe I made it through about a minute, which I feel was an improvement over what would have happened a few years ago. So for me, it helped to show me how much I have improved if that makes sense.
Perhaps make an appt to speak to social worker or just go to the facility and speak to her in person- whether they like it or not! I would do the same for my sister! As we all know, we have to be our loved ones and our own advocate!
God bless you and family!
Thank you everyone! The guidelines are very helpful.
I understand that brain injury can cause a person to have labile emotions - and she definitely does. She cries often, but it doesn’t last long, and then seems to return to her “normal”. She has a lot to cry about - this has left her with no ability to walk, toilet, drive, they’ve taken her money, and they want her home, and she cannot see her dogs (which are her children). In a better world, we’d be able to get her home, with assistance of course, but at least to HER home. I don’t know if this is feasible. I’m still trying to decide what to do with her dogs - and it’s very stressful. If I even mention adoption, she breaks down. I’d also be open to an assisted living facility where she could have SOME independence - but that isn’t possible at least now. She can’t walk, she gets confused, no use of her left arm, etc. All I truly know is that the injustice of this is overwhelming and I have to get her out of that craphole where she is now. Blessings…
Sometimes facilities will allow dogs to visit. I took ours to see my Dad when he was in such a place. The only part she wasn’t allowed in on the floor was the dining room. His dog was too afraid of people to take, she could handle it now but not all the commotion back then. One time, I was waiting for him to come out of the dining room and when she saw him, she tried to jump on his lap in the wheelchair. It may have been the first time I took her. The employees were a bit frightened at her sudden excitement. All was good and everyone laughed once we settled her back down. Dad would hold her leash and I could wheel him outside. Some visits, she was wanting to pull him in the chair. He loved it! In a very short amount of time, she learned to stay at the heel with him in his chair. All I had to do was have our Veterinarian’s office fax the facility her shot records. She couldn’t just go up to any patient as she wasn’t a therapy dog. But many in his floor asked if they could let her. Once the Charge Nurses became used to her, anyone who wanted was allowed to interact with her. Some even came down from the other end if not to pet, they’d carry on conversations. Some of those conversations were only understood by the way she responded, sometimes a lot of wagging, sometimes she’d pull to just stand nearer or even put her head in their lap. She did have a rule that she had to sit before being petted, so that helped a lot. They said it really helped the patients who had been missing four legged friends that became family. Quite amazing for a young dog that had been in the pound for many months. Maybe you could see if they will allow one dog at a time to visit with her. It might just help with some recovery…
One of her dogs visits her regularly. I have given one to a colleague and friend and I know he is very well taken care of. The remaining dog is a problem child! 85lbs of anxiety and a dislike for other dogs - hard to re-home. Anyway - I have reached out to several organizations for help, including an ombudsman who is doing a check on the facility next week, an organization called AccessABILITY who is hooking her up with a peer (also suffered rupture and stroke) and an in-home care organization that is going to assess her next week for the feasibility of getting her home. All while we wait for Medicaid and Disability. I’d love to hear from other caregivers about their experiences placing loved ones in assisted living or moving them home. These seem daunting to me! Thank you!
@trust_level_0 Fantastic! You have been extremely busy, no wonder it’s so daunting! Are you giving yourself some days off from all this? Two weeks after I came home from NSICU, we had to put our 65 lb Lab down that saved my life. I was and still am under Dr orders to not lift more than 40 lbs (I don’t listen often to that order). I remember BH said no more Labs, no Boxers…I went down to the Neurosurgeon who did my back surgery and he wrote a note that I could have a Lab. Maybe explain the 85 lb dog will be too much for her will help with the loss
Ben’s Friends does have a caregivers support group and maybe they can help as well. https://caregiversupportcommunity.org/
I started this with the trust level so maybe more members will respond that are caregivers. I hope it works, if not, I will ask @ModSupport to help me out.
My dad was in an Alzheimer’s facility and they allowed their patients to have their dogs live at the facility. There were several dogs there. Many of the dogs had stayed at the facility after their owners had passed. The facility/patients just adopted them. My dad didn’t bring a pet, but became very friendly with 2 of them. The day that he passed they say at the end of his bed the entire day. There are facilities that allow pets so I would check with other facilities.
Hi Nala33. I’m sorry to hear about your sister and hope that she gets help from care and support services that she deserves. My mum had a ‘massive’ bleed from a ruptured AVM when she was aged mid 50s. She was on holiday visiting relatives at the time and thankfully had insurance. The insurance company were fantastic. All I can say is that the physio that was arranged for her, was like a magic pill. She swore and cursed like a sailor at the physio, who took it all in his stride. She recovered eventually, I’d say after 3 months, with no physical disability other than a quadrantinopic visual field defect and slight left arm weakness. When she arrived back, my kids helped her recover further, by playing ‘catch’ with her and forcing her to do their jigsaws. The hospital abroad did not perform surgery but used I think manitol, to allow the blood to reabsorb. She had a 2nd bleed here in the uk around 11 years later, and did not receive appropriate care from the drs here.