My screen name says it all. I am in a confused and conflicted state. I won't bore anyone with the details-particularly those who've been down this road-totally alone-for years. I'll get to the point. Mom has progressed to totally bedridden and requires 24/7 care. I'm middle aged, have health issues of my own and have lost everything-moving to a state 1k miles from Sunny/Warm Florida. My sibling is schizophrenic and mom enabled her so doesn't feel the need to help and just wants money. I'm out of work taking care of them. QUESTION: In home hospice, with whom I met today, will probably approve her as she is approx stage 6/7 on the FAST dementia scale. I am sick and terrified. But, when I see her alone (currently in Palliative care-insurance about to run out) we cannot afford the 10k per month. We will be wiped out in weeks. Should I bring her to her home of 40+ years which I fixed up? How long could the 'end' go on and what toll will it take on me physically, emotionally, financially, etc. or should I sell the home, get back to work and live with the guilt and worry. SO SORRY TO BE LONG WINDED, but this disease is unpredictable, complex and painful for all. I've never been so sad or conflicted. At least she is out of the mean/cruel to me stage, I pray!

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My mom died of dementia and aspiration pneumonia after a year and a half in the nursing home. Many people on this forum have taken care of their loved ones at home with the help of hospice, although my original intent was to do the same I know that it would have been impossibly difficult to care for her physical needs let alone having to cope with the realities of her death and dying. I think the only way you should consider this is if you have a very good support system other than hospice, although they are a wonderful help the majority of the care and decisions will all be on you.
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Morass Jan 2019
That's what scares me. It is just me. One thought was to bring her home under Hospice. She is being discharged in 3 days. If I cannot handle it emotionally/physically, I can place her back in the nursing home and, hopefully, have enough money for another month or two.
First of all if you sell the house do you have somewhere to live?

My dad died of cancer at home and hospice was great, however, do to the fact that mom is in stage 6/7 of dementia it is hard to say how long she will live. It could be a few weeks or a few months! I can't tell you what you should do, but maybe help you figure some things out!

You are I believe burn out and tired beyond words. You have to take care of you. Your mom is now just a shell of a person; she is not the person she once was. There is no reason for you to feel guilty--you didn't do anything wrong. Guilt implies intent (as in bad intentions). You have given and done all that you can and did the best you knew how under extreme circumstances. That is what we are all doing, the best we can with what we have.

My mother use to say these two things, 1) "you don't have to answer to no body but to God and to yourself, 2) you have to live with your choices."

So I must ask, "what can you live with?" That is the question that will give you your answer! Remember your mom doesn't know you are there or not! I am afraid the this is a question that comes down to "personal choice," no one can tell you what is best for you, nor can anyone make the decision for you! But I will say, if you have nothing more to give and you feel you are hanging on by a thread than maybe it is time for you to do what is best for you and walk away.

If you decide to stay you can apply for Medicaid if mom doesn't have any money or assets. However, Medicaid can put a lien on her house from my understanding. Having hospice in home does mean you still have to help take care of mom day-to-day, but hospice does help but not sure just how much. I am sure there is others here who can answer that question better than me!

I am sorry that you have to go through all of this. May you find answers and peace. Good luck!

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Morass Jan 2019
Thank you, Shell. She is not eating/drinking enough to sustain life. Like you said, I don't know how long this could go on. I'm afraid of doing this alone. If I sell the house to pay for her nursing home care cost, I will have to go back to Florida as I still have a condo there and have nowhere to stay here. Sure enough as soon as I get a job down there, she will pass and I will be right back up here for funeral, probate, etc. It is tough. I appreciate your response and am sorry for the loss of your dad. Mine died of Parkinson's.
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I had the best experience with Hospice. As I have said many times I would not have been able to care for my Husband at home if it had not been for Hospice.
I got the supplies I needed. Delivered to the house.
I got the medications he needed. Delivered to the house
I got the equipment I needed. Delivered to the house
There was a Nurse, CNA, Social Worker, Chaplain if I/we needed on, therapists of almost any kind that would come to the house.
I got the education I needed, the emotional support I needed.

How long can the "end" go on? My Husband was on Hospice almost 3 years. Most people are on Hospice for less than a week because their doctors did not refer them sooner or the family was not ready.
The best thing you can do is interview a few Hospice there are basically 2 kinds, Not for Profit and For Profit.
Select the one you like best.
Once you go on Hospice if you decide that it is not what you expected, you are not getting the care that you expected you can change to another Hospice or you can go back to the doctors she had before. This is like selecting any other doctor you find one you think you will like and after seeing them a few times you realize it is not a "good fit" you change doctors. Same with Hospice.

Great thing about Hospice is they will be there for you as well. Hospice "treats" the family not just the patient.
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I'll answer your questions from last to first.
How long can the end go on?
Longer than you can imagine. If there's one thing I've learned, there is no "set" time line for each stage of Alzheimer's/dementia. It seems they can get "stuck" in stages, so there's no way to predict a time frame.
Should you bring her home?
ONLY if you are physically strong enough to turn/reposition her every 2-3 hours, day and night. Can you handle incontinence (pee and poo)? As things progress you may be looking at multiple diaper changes per day.
Have the aides at her facility show you how to do all her care. DON'T forget, there are 3 nursing shifts there and you would be the only one providing care 24 hours a day at home. The fact that they can do their jobs so well is that they have a 16 hour break in between. You will not have that. We, on this forum, can tell you the extreme exhaustion you will suffer trying to work 24/7. Are you physically up for that?
If you are also caring for a schizophrenic sister, then you're probably mentally exhausted already. Can you psychologically stand the strain of adding 24 care of your mom to the mix?
Also consider, if you take her home, it may be VERY hard to get her readmitted just because YOU are exhausted. That may be a deciding factor.
Should you sell the home, go back to work and live with guilt and worry?
Does your mentally handicapped sister live in mom's house? It may not be that easy to sell the house if that's your sister's primary residence. Is your sister on meds and has stabilized? Does she work? Or, has mom been her financial savior? There could be legal ramifications to you selling the house because your sister would be displaced and mentally incapable of finding another living situation. Talk to legal counsel if you can about that. Check out the Senior Center in your town. They often have free legal advise for elders (your mom's situation).
About you going back to is not working affecting you? Are you living off savings? Will you have to declare bankruptcy if you continue to stay there? Can you get work in the town where your mother lives? You can't jeopardize your financial security and put yourself in a situation you can't recover from. You must remain solvent or you'll suffer in your own retirement.
Could you have mom transported to Florida to be closer to you? Would her doctor authorize a move that far? It probably would have to be by transport ambulance-that could be pricey.
You must talk to a Social Worker at the Palliative Care facility immediately about signing her up for Medicaid. They can do retroactive payments. You will need to "spend down" all her cash first (keep receipts) but then she'll qualify to have her stay in the facility covered. The facility has to have someone who can assist you in this. Also tell them about your schizophrenic sister (if she lives in mom's house).
Since you state that you have health issues of your own, my advise as a nurse would be to NOT recommend you take your mom home and be her caregiver. It could exacerbate your own medical conditions. Leave her physical care to those who can physically deal with it. You've got enough on your plate dealing with everything else.
Hospice can be a blessing and can work with her no matter where she is. Enlist their help also to get her coverage to stay in the care facility.
Lastly, as Country Mouse said, NO guilt. You are doing all you can and doing the best you can.
I'm so sorry for you (and your mom) in this situation.
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Is she currently in a Nursing Home? Talk to the social worker today about applying for Medicaid.
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I brought in hospice to stabilize my Mom. They were wonderful and supportive to both of us. She had several falls and passed away 2 weeks later. I’m thankful they helped her not suffer.
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cak2135 Jan 2019
My sister and I had home hospice for my mother. The nurses we had were great, and my mother went very quickly and peacefully. This was 11 years ago
My mom was also bedridden and needed 24/7 care. They kept trying to rehab her after a fall but it only got worse. She was in a nursing home for rehab when she went on hospice. I decided to take her home on hospice. The hospice staff was great, but most of the care fell onto me, meals, changing, etc. Mom was in my home for nearly 8 months until she passed away. She was completely incontinent with constant UTIs and a urinary catheter. She also had a bad pressure wound she got in the first rehab she was in. I had to learn to care for the wound, empty the catheter bag, give her medications and insulin shots, etc. There were hospice and medical equipment people in and out of my home several times a week. Furniture had to be moved for a hospital bed and a hoyer. I had a desk especially for her medications and medical files. Basically my home became a hospital for one patient and I was the main staff. I got through this time by learning all I could and taking it one day at a time. She had a TV, and I played soft classical music that she liked. It was much nicer for her and quieter than the turmoil and ruckus of a nursing home as mom was always a very private person. This all worked because she was a docile patient and loved her hospice staff too. It did leave me with some anger issues as to why her decline had to be so rough and prolonged, and why some people just disappeared on me at that time. I had a spontaneous retinal detachment that needed an operation at during this time too. Luckily that was outpatient. I think the thing to do here is talk to the hospice people and get an idea of what kind of things you will need to do. If you choose to take mom home, please take it one day at a time and remember to take care of yourself too. Even little things you do for yourself like a good cup of coffee or watching the birds in the yard add up. Whatever your decision, I wish you all the best.
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Wasn't a good idea for us, we barely saw them...nor could we ever get them on the phone....we had one good nurse who came on his last day home.....he suffered way too much staying home. He was more peaceful being at hospice.
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hannahBN Jan 2019
I'll validate what you said. Same experience here with husband two years ago. If I had a crystal ball back then, his last month would be inpatient with much better care than I could do on my own.
Morass, it's so hard.

Thought 1, for the guilt. You know you didn't make any of this happen, right? Didn't make your mother old, didn't give her dementia, didn't make your sister schizophrenic, didn't force your mother to live a thousand miles from your home and work and life. Not guilty.

Thought 2: Occam's Razor - the simplest answer is usually right. If option 1 means, essentially, hoping that your mother dies before her money runs out and if she doesn't then God alone knows what you'll have to do but at least she'll be at home, with hospice services, and you'll be with her - trying to ignore growing terror about your own future and with creeping responsibilities for your sister... that, sounds, quite, complicated. And almost entirely uncertain.

Is it the case that at this point you can refer your mother to a decent Medicaid-approved nursing home, sell her home, use the proceeds to fund her care and thereafter transfer her to Medicaid, and meanwhile get back to your own home in Florida and resume work? Because that, by contrast, sounds comparatively straightforward and predictable. Just, I realise, a bit cold.

But if your mother will be fine either way - can you see either option making much difference to her wellbeing, through her own eyes?

Realistically, what contact would you be able to maintain if you returned to Florida? Make a kind of contact schedule, of calls, Facetime, emails and even visits, and you might see you'd be in closer touch than you'd realised.

I suppose the choice is:

make your mother your job and put your life into suspended animation indefinitely

resume your life and commit as much time as possible to your mother's care and wellbeing.

Making sacrifices for a loved one's sake can be worthwhile, if you're certain it will improve the outcome and you know what you're being asked to give. Well?
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It sounds as though Mom needs 24/7 Care and Not sure Hospice would do this at her own home. I do know that Hospice only allows One to stay 6 Months max, For they pretty much know when that person terminal illness is going to end. I would try to Apply at a Skilled Nursing facility but of course, It is a Medicaid deal if they feel you have too much money and you failed to do the "Five Year Look Back," Which is sure Whack.
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Morass Jan 2019
Exactly. That is where we are-between the devil and the deep blue sea.
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