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Hi all, my mom has dementia and recently had to go to the hospital. She had trouble walking and was talking incoherently. They original thought she either had a stroke (since her bp was 200/100) but that was ruled out after MRI and CT scans. They then said she may have an infection but all the tests came back negative. It may have been her potassium levels since they have dropped in the past and had to be hospitalized for the same issue in the past. During this time the hospital suggested I should either put her in an assisted living facility or get hospice care for her at home. My mom has always said please do not put her in a home. It has become very difficult to take care of her as I am by myself. Luckily I have a job where I can work from home for now but that could change. Her alleged friend for over 40yrs basically disappeared and hasn't really visited her since my mom developed dementia. Everything has come down to me. I have been thinking about putting her in hospice care at home. I want my mom to be comfortable and avoid going back and forth to the hospital. But I feel like I am giving up on her if I choose hospice. Am I wrong?

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As others have said, hospice is end of life care and doesn't provide significant hands-on care. From what you write in your post, I don't think your mother needs hospice, but does need hands-on care to help you.

You can either get someone to come in and help or find a "home" for her. Either way, you aren't giving up on her, you are finding the best possible care for her while ensuring you mental, physical, emotional and potentially financial health is secure.

My mother is in a home as she needs a level of care I could never provide. She gets excellent care, social interaction and medical support without having to travel to multiple doctors' appointments. Her mental and physical health is by far better because she is in a home. It also allows me to care for my own kids, work and pursue things I enjoy.
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I can tell you first hand that having hospice care in the home is not much help at all. Yes, they will have a nurse come once a week to start to take moms vitals, and an aide to come bathe her around twice a week, but that's it.
That means that 99% of moms care still falls on you or someone else.
My late husband was under hospice care in our home for the last 22 months of his life, and yes I did 99% of his care myself, although I did have to hire an aide to come put him on the bedside commode every morning so he could poop.
If you think it has been difficult for you before to take care of your mom, just wait. It will get even harder.
So please do what is not only best for your mom but for you as well. And to be honest I would be asking her doctor why hospice was recommended to begin with because like others have said, it doesn't sound to me that she's ready for their care quite yet.
Best wishes in getting this all figured out.
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I'm in a situation a lot like yours-except I don't have ANY power to do anything about it.

My MIL had a brief stay in the hospital some months ago. She was then deemed incapable of living alone, due to her increased dementia and general failing health. She's 92.

She also extracted from her 'kids' that awful promise they would never put her in a home.

So, here we are, nearly 3 months later with 2 of the 'kids' caring for their mother 24/7. The trade off days and nights. The oldest sibling tried to help out, but just couldn't stand it. He is now down to 2-3 4 hr shifts--maybe.

My DH is one of the kids. He's 71. His OB is 75, their sis (who is the driver of this crazy bus) is 67.

I live in fear that my DH is going to have another heart attack over the incredible stress that shoring up his mother in her home is having on him.

She IS in Hospice care, but they don't provide ANY hands on care. MIL refuses all outside care, so it's all on the 2 involved sibs.

What they SHOULD have done is move her from the hospital to a NH or MC center, and not brought her back home. Now we are just sitting here, waiting on the inevitable, which could take months and months yet.

If you truly want advice, a lot of people are going to agree with me that the 'promise' to keep a LO at home to the end becomes simply and completely unreasonable and unsustainable.

40% of CG's die before the person they're caring for dies. (Likely b/c the CG's are often the spouse). BUT--my DH is a not super healthy 71 yo--and his brother is 75 and not in good health.

This dynamic is slowly, but steadily ruining our lives.
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Hospice is end of life care.

I am curious who has suggested that your Mom's death is eminent, or that it will in all likelihood occur within the next six months.

Some are ordering Hospice now as extra care. But the truth is that there is little help OR care often enough in the hospice of today.
They will send an aid two or at most three times a week for a hurried bath, an RN once a week, have a clergy person and a social worker call you, offering little but a chat, and give you a nice bottle of morphine if there is pain.
This isn't really going to help you in the care of a mom who may not be passing any time soon. I am afraid that Hospice has gone now into hedge fund territory, for profit and investment, a part of the military-industrial complex. It is automatic and rote. Some few good ones remain; rare as hen's teeth.

The other fear with getting hospice in when end of life isn't really near is that they may inadvertently hurry along the end of life with the administration of drugs, thinking that there IS some dire diagnosis.

So I would interview hospice very carefully as to what you expect, and what to expect from them.

As to promises we make to our elders when they want our assurance that they will never have to enter in-facility care, they little matter in the face of harsh reality.
There is no need for guilt on that score as you didn't cause your mom's aging problems and you can't fix them, nor should they ruin your own life.
As to grief, there is that a-plenty in our lives, and certainly in your standing witness to your Mom's losses.

I am so sorry you are facing this down. I loved hospice when, as a nurse, I witnessed it finally come from across the pond to us. It was a mission then and people who worked in it did it as a vocation. Those days are done and gone.

I wish you the very best in choices going forward and my heart goes out to you.
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Nocturnal01 Jun 2023
Thank you AlvaDeer
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You will either need to use your mother’s money for help to come into your home , to give more hands on care than hospice provides, or move your mom to a facility . Her needs will increase . Look for memory care facilities . There will be a doctor who sees her there . They also have podiatrists come and cut nails . Where my father in law is, they will take him to other doctors, like neurologist, cardiologist , etc . Freeing you up from that . Sometimes my husband will meet his Dad for some of those appts , but it still saves him time from having to pick up and drop off his Dad.
If your mother can’t afford memory care in an assisted living type facility , then she can apply for Medicaid and go to a long term facility .
In some states Medicaid will pay for memory care in assisted living . An elder care lawyer can help .
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I’m glad that you are an able to work from home. I was still working when my mom came to live in my home.

As my mother’s Parkinson’s disease worsened, she required more care and I made the decision to stop working. I regret this decision enormously.

I wasn’t on my own like you are. I am married and have two daughters. Still, it was a very poor decision to quit my job so I could care for mom full time.

Please don’t wait until things worsen before you start to research all of your options.

Don’t repeat the mistakes that I made by feeling as if I had to do all of the hands on care myself.

I would suggest that you look into finding a good facility for your mom. Oversee her care and resume your life without being her full time caregiver.

Best wishes to you and your mother.
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What you are giving up on w hospice is schlepping mom back and forth to the hospital for a bunch of poking and prodding tests where I Don't Know is the conclusion they draw. She's old. And tired of being poked and prodded and run thru coffin like machines that screech and boom while talking pictures of the brain BUT STILL drawing no conclusions of what's going on in that brain.

The doctors don't know for sure that your mom will qualify for hospice. They only know that she's old and infirm, but they can find nothing seriously wrong w her to point to, so confer w hospice. That's standard operating procedure in the hospital where the only goal is discharge, AD or dementia alone is often enough to qualify for hospice. "Senile degeneration of the brain" is the Medicare code hospice uses for non AD dementia.

Hospice at home will get mom a few supplies and medications for free and a few nurses, chaplains, CNAs and social workers to come by for a few hours in TOTAL each week. That's it. Leaving you the OTHER 23.5 hours per day to do the real caregiving. So how does this make you a person who's giving up on mom, I have no clue. Look at the situation realistically. I had my mother w dementia in Memory Care Assisted Living w hospice at end of life bc I was in no position to do her care at home. And no, I am not wrong or a daughter who gave up on mom...just one who knew her limits and recognized the level of need mom had. The dementia is what ruined her life, nothing else.

Wishing you the best of luck with all of this.
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Nocturnal01 Jun 2023
Thank you so much lealonnie1
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My Mom was on Hospice for two years but she was in assisted living as well. She got bathed three days a week and the nurse, chaplain and SW visited once a week, they also called me. She is now back on Palliative care but I miss the support Hospice gave us plus her expensive supplies were payed for.

you will not get the level of care an AL or NH gives with Hospice but they will provide medical and other support for you and Mom
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Hospice is not giving up!
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Nocturna, welcome!

Hospice does not provide all that much hands on care. A nurse will take vitals once a week and perhaps you'll have an aide to bathe her.

The thing that made me sign up for palliative care (not hospice, but same underlying philosophy) was that my mom's physical ailments were no longer "fixable". She had CHF which caused periodic fluid buildup around her lungs. After this was drained twice, the pulmonologist sat me down and said "stop poking holes in your mom. It's not fixing anything. It's just delaying the inevitable". Coupled with the fact that every trip to the hospital set my mom back three steps made it very clear that we needed to let her get treated at the NH she was in.

The thing is, my mom was in a NH, so she had trained medical oversight of her very real medical needs. That allowed us to visit as her kids and to advocate for her best care. Mom probably remembers the awful NH's of decades ago. Find a good one.
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