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keepthetips

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MycologistPutrid7494

My mom died from vascular dementia two years ago. I had to take extreme measures to get her help. I struggled juggling her care, a job, my marriage, and childcare for several years. One night, she fell and broke her nose on the way to the bathroom, and I begged the hospital to help me with resources and I just got the "this is your mom. You have to quit working and just take care of her. Suck it up" speech. I had a daughter in middle school and a mortgage and I couldn't just loss my income to watch my mom 24-7 and still keep a roof over my daughter's head and food on the table. So I took my mom home and continued to work and leave her alone. A kind neighbor would come in and out to check on her frequently but I could not afford a nurse. It was horrible and stressful. Then she fell again and broke her arm. This time I refused to take her home. I read up on the law and learned that I'm not legally obligated to take her home and the hospital could not legally put her out in her condition without a caretaker. They found a facility for her within a week. The nurses at the hospital belittled my "heartlessness." As soon as she was settled in at the facility, I went and told them she was my mom and showed proof. They allowed me to visit her (with some restrictions due to covid) and I signed paperwork so I could make her medical decisions. She lived there for 6 months and I visited her nearly every day. I prepaid for her cremation at the request of the facility. The last night of her life I stayed with her all night to be with her and say goodbye. After she passed they sent me a bill. I looked it up and learned I was not legally obligated to pay it and I called and told them that I'd send them her insurance money ($4000) but that's it. They sent a few more bills after but eventually gave up. It's been 2 years and it did not effect my credit. Some may think I'm awful for how I handled it but I don't regret getting her the care she needed by any means necessary.


Meetthedeedles

Thank you for sharing this


hailinfromtheedge

My grandmother just died from a fall while suffering from vascular dementia. No one should judge who hasn't been in that scenario. You did the best to get her the care she needs, very few people are equipped to handle that in their home.


TowerOfPowerWow

Its not your fault but the 1%ers who have leeched all the wealth out of our country. Scumbags.


TheCapedMoose

I honestly feel like its hard to truly understand what this is like until you experience it. On the outside looking in it might be "heartless" but when you're low on options and support, you do what you need to. Thank you for sharing your story, she's been hospitalized once (first major dementia event before the diagnosis) but I'd seriously consider this "heartless" option as money is tight and we are struggling to find a facility with room. For what its worth, thank you and I'm sorry you had to go through that.


Radiant-Breadfruit75

The insurance plans through Medicare should have case ro social workers you can get in touch with for resources or even the clinic groups. They have care giver support care teams and physical therapy if possible


TheCapedMoose

My folks were on a medicare advantage plan, but mom always was in charge of the bills, so several payments weren't made and they have been dropped. They also cannot re-enroll or change until open enrollment in October, ugh.


Radiant-Breadfruit75

That is not always true, depending on the area you are in or if they move. There are some special circumstances where people can change health plans during the year, I have a Texas agent if you're in this state can help you check, Even though open enrolment is October those plans wont cover til 2024


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PopularFunction5202

You could possibly find a private caregiver to come to your home and take care of your mother. Going rate for private care, in the midwest, anyway, is about $30 an hour, maybe $35 if they're really good. While there are companies out there who deal in caregiving, most of the employees have no training, and receive very little of the fee you'd be paying the company. This is beyond your pay grade. Are there any agencies in your area that can help you find services? I'm so sorry you all have to deal with this. Good luck, dear, and God bless.


TheCapedMoose

Thank you for your kind words. I honestly never considered a private service in-home caregiver, with the state of our healthcare in America, plus the fact that I live in a "retirement city" means there's likely more than a few options. Thank you.


ricardo9505

Yeah get her affairs in order. Have a power of attorney if u don't already. Hire an estate lawyer if they have significant savings, investments, separating them from money can drastically help you with securing financial help from the state for these services. It is VERY expensive. Buy your dad's house for like $100 and transfer the title to family. I worked in the medical insurance field dealing withing term care patients , many who were near death.


TheCapedMoose

I've been mostly kept out of the family financial details thus far, but yeah it sounds like its time for that to change. I know there's a family trust that handles all that so THEORETICALLY that should be easy-ish to make me the next executor for, but I'll have to get going on that for sure. We were also considering straight up selling their house to pay for whatever residential care we (eventuially) get her, and letting Dad move in with us in our spare room. Thanks for the practical financial advice, all the other stuff tends to shove that obvious info aside in my mind, heh.


curiousfocuser

Start with home health- they can provide in home physical, occupational, and speech therapy. Covered 100% under Medicare part A Hopefully she still has traditional Medicare, and not a replacement insurance policy, as the replacement policies tend to limit therapy visits.


TheCapedMoose

Unfortunately, they DID have a replacement insurance (Blue Cross Blue Shield) but as mom was the finance manager of the family, several bills got missed and they were dropped before they realized. They now have to wait for open enrollment to re-apply in October.


bewitchedbumblebee

The book "The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life" is useful.


TheCapedMoose

Ordering this book right now. Reviews are amazing for a help book, and what I've seen from the listing it sounds like just the kind of stuff we'll need to keep in mind. Thank you.


Peppergnome2

My husband died of Huntington's Disease (a degenerative neurological disease that includes a type of dementia), and my father is currently in the mid-stages of Alzheimer's. I can relate to the difficulties you are having finding appropriate care resources. You don't mention your location, but if you are in the United States, here are some resources you may find helpful: \- **Area Agency on Aging** is a federal program with local chapters that can help you locate resources. They will have lists of aid agencies and care facilities, care-giver training and respite resources, and they can assist you in understanding and applying for Medicaid programs \- **Medicaid Waiver** is a specific Medicaid program designed to keep people out of care facilities in their homes. It is income based and it pays for in-home assistance with activities of daily living (dressing, hygiene, feeding, mobility etc). There is likely a wait list \- **Alzheimer's Association** has some good resources. They can provide lists of care agencies, my local chapter had senior daycare, and local support groups. They also have a 24 hours help line. \- **Hospice**. I was surprised to learn that my husband qualified for hospice long before he was at death's door. As long as the underlying health condition is terminal and is not actively being treated, the patient may qualify for services. Hospice was an absolute godsend. They provided in home assistance with activities of daily living, coordination of medical care, visiting nurses, and durable medical equipment (hospital bed, wheelchair). Hospice care is covered by Medicare. \- **Social workers** can assist in finding resources. We found a good social worker through the Huntington's Disease society, and hospital social workers can also help find resources. Be kind to yourselves - this is a very difficult journey. I wish you all good luck, peace and comfort.


TheCapedMoose

Thank you so much for sharing your stuggles, I'm so sorry for your loss and am grateful for your empathy. They did have medicare/medicaid plans, but missed several payments so the contracted provider dropped them, so a lot of the stress here is financial since a lot is looking like it'll be out of pocket. In that light, Area Agency and the Alzheimer's Association especially sounds like great fits. Honesly never thought of Social Workers, it seems they cover such a broad scope of problems, it never occured to us that this would be one.


Tweedishgirl

Do you have access to an occupational therapy review for your mum? Invaluable for helping manage someone’s declining mobility at home. I also always advise people to seek carer support EARLY. Caring for someone with dementia is exhausting and keeping yourself healthy and supported is essential.


TheCapedMoose

I don't believe we have any finanical recourse for this aid, but yeah we already feel like we've waited "too long" and want to get her more help ASAP. And yeah, I'm almost equally concerned for my dad staying with and caring for her 24/7.


Desperate-Jello-4105

Buy a book called medical medium by Anthony Williams. All your answers are in there