Bringing in home hospice?? Good or bad idea?

I took care of Mother by myself for the first 6 and a half years after she broke her neck and her decline began and then one day,I had an appointment with the doctor,who happened to be my Mother's doctor too and as we were talking,he said he didn't realize that I was the only one caring for Mom and he told me he'd get me some help and that it would be from Hospice.He said she qualified and he would talk to her about it at her next appointment and she decided it would be a good idea,especially if it would help me too,so we brought Hospice in.
We had good things and bad things that happened with our Hospice for the next 3 and a half years that Mother was on it then.Some of the good things were that a nurse came 3 times a week and a bathaid came 3 times a week too and we had a Chaplain come about every 2 weeks and a Social worker came every now and then.Through a grant,Mother received Compassionate Touch,where a lady came and rubbed her poor back once a week too.Hospice took care of the supplies Mother needed like her diaper's and oxygen and all her medicine was delivered.Hospice helped us in lots of ways,but we did have some problems too.
Once our Hospice tried to take my Mother off their service saying that she was better when she wasn't,so I appealed it with the Quality Improvement Organization and we won the appeal.We also had trouble with one of the nurse's that said and did rude things and we had to change nurse's.There was also the time when the Social worker told me I needed to catch my Mother a little cold,so it would look better on their paperwork that Mom was still on service.And they had promised Mom and I that there would be Bereavement help for 13 months after she died and on the exact day Mother died,I received a letter from Hospice saying my time was over with them,12 months later,not 13 like they had promised.
I was grateful for the help we did receive,there were just some disappointments too during Mother's time on Hospice.
I hope you find what helps you all.
Take good care~

If your money is running out and you can’t afford $10,000 a month, yes, bring her home and spend money on a caregiver to assist you. hospice can go on for a while or can go fairly quick. Depends on much she wants to live and how well she’s cared for. Good luck

My Father had 6/7 scale dementia and we tried to take care of him at home and yes it requires 24/7 care which is not possible for one person, especially if you are not a trained medical professional or an aide. All in home hospice does is have aides come in and help with companionship and light care duties - not everyday. Also, I will tell you take the aides that visited my Father didn’t want to do anything but watch tv with him. I really had to push to get them to help with bathing and they didn’t want to help with toileting at all. An RN might visit from time to time, but mostly hospice doesn’t do much. The question is who administers the comfort care packs? Meds to make patient more comfortable. Sure they what you to take her home because that is best for them. Is any other faculty available? A nursing home? Also, how she is eating will determine the amount of time she has with you. With my Father they wanted to withhold food and water, but we pushed back. THEY SHOULD BE ABLE TO GIVE YOU A TIMELINE. I’m going to be blunt, but it’s quite likely that you will be by yourself administering morphine when she is going through the dying process because a hospice representative might not be able to be there on short notice. If hospice is not going to administer comfort meds then they are not going to do much. We were sold on what they promised like a visiting clergyman, but in reality what they delivered was much different. I’m sorry this is so hard for you. In the end you just miss them. You are an angel 😇

Hospice or Palliative Care may be best IN THIS CASE.

I am for Hospice care! You will be amazed at the wonderful care!

I’m in favor of the hospice care. I took care of my father for 4 years, when he became completely bedridden I found out I had hit the wall in my ability to care for him. Unless you are very strong it is impossible to do the many things required to keep her healthy and free from bedsores that can develop quicker than you can imagine. All this is if you bring her to her home, since hospice is only going to provide a limited amount of care, they won’t stay with her 24/7. You will have to figure out the rest of the time how to manage. I hired a young man that came and helped with dad, he was wonderful but you will need another person if you can’t move and shift her. All that being said, if she can be placed somewhere that will care for her 24/7 that is what I would recommend since you have your own health issues to deal with. Contact your social services department, they can help you with the money aspect after her palliative care insurance runs out, the sooner you start the process the better since the government moves at a snails pace it seems. Good luck and my best to you and your mom.

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.

Palliative Care and Hospice are for stages, If your moms dementia is her primary condition, are you sure Hospice is needed at this time, or are you trying to prevent incurring debt that you can not afford for a longer pain management treatment of Palliative Care? If so Hospice is not the answer. If you have been provided a prognosis from her physician that fits Hospice criteria discuss this was your interdisciplinary Case Worker, Nurse and or Doctor. End of Life is not a relief, just a process. Have you and your mom ever discussed her wishes? It is good that you are seeking support, but this isn't a decision that even someone who has been through this process, can help with an answer, or advice, just support and the best in finding a balance.
Cynthia

OH what a hard decision! Been there!
I promised my mother I wouldn't do it but it came to a point when I was exhausted!
Hospice... it turned out I called on a Monday they came out on a Friday early afternoon, my mother died late afternoon that same day, but let me tell you the relief I had for those three hours was great! I didn't have to worry. I got to visit my mother. Keep her company and finally give all my love! I was not stressed during that time because hospice had taken over.
Blessings
hgn

Looooonngggg road. My mother was diagnosed 10 years ago, with Alzheimer, after 4 years of trying to get her to a doctor to determine what was happening. Country mouse and SueC1957 said it well. My mom is still able to pivot to a chair. basically non-verbal for 3 years. As slow as her body has deteriorated she could live another 5+ years. The money has run out after 5 1/2 years in a memory care unit and having hospice helped get her placed in a LTC and get the medicaid process started. Hospice followed my mom from one place to the other and have been a blessing. Guilt is also there if you want to feed it. You need to know your capabilities. I for myself was short with my mother when she was walking 20/24 hours, and sleep deprived. I have thought that since she is no longer mobile of bringing her home (guilt of not being there for her as she still gives facial and behavioral responses that indicate to me she does know fairly often what is going on). I have to question would I be resentful of giving up 5 years of my life for hers and therefore eventually be only giving her physical care, not the emotional support I give her now. I do not want to take that chance. So, others are caring for her.

I hope you can find a solution that brings an overall peace of feeling I did the best for all in this situation.

Morass,
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 work....how 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.

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?

Always plan for worst case scenario.

Last July, the doctor gave dad three to six months prognosis. Because of that, I had him moved in with me. Home health nurses came 3x week and said the prognosis looked accurate. Two months later, his health improved. The doctor changed his prognosis to two years. Now, home health nurses said they have seen patients in his condition become stable for years.

Start with inpatient hospice if insurance covers it. Insurance may not cover the SNF, but possibly hospice. You have the option to change to home hospice later if the prognosis is short.

Always follow your instinct and take care of yourself first. Intense care giving can drain you faster than you imagine. Unless you have care giver help constantly, the work load is possibly much more than you expect.

I went through home hospice with my husband two years ago and I agree with Chemoangel, he would have better care as inpatient. Hospice only came once or twice per week until the last week and then it was every other day, only checking vitals and catheter.

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.

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.

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.

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.

Medicare pays for hospice. I am not sure if this covers what you need: https://www.medicare.gov/coverage/hospice-care. My mom was on hospice. She also had a daytime aide through Medicaid. The hospice people were wonderful.

I heard different stories about hospice, some people saying they are great and some that NOWADAYS its all about business and they providing a death....Its hard to decide....

My mother is under hospice care even though she's not terminal. They're wonderful. Our social worker will stand up for me to my brother who is not helping at all except to bring paper towels, toilet paper and food whenever the mood hits him. Our CNA and nurse to above and beyond for us.

I wish I had answers for you. My heart goes out to you. I care full time for my mom with Parkinson’s and it’s hard but not as hard as what you are dealing with. I can relate to your exhaustion and not having a life for yourself. I hope it gets better for all caregivers and their loved ones.
God bless you. I am praying for all of us.

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.

Is she currently in a Nursing Home? Talk to the social worker today about applying for Medicaid.

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!

Hugs

We were faced with a similar situation last fall with Step Dad. Luckily his doctor saw that one he would not live too much longer and two that there is no way Mum could have managed having him home to die. He died in hospital about 6 weeks after he was admitted.

Can you apply for a subsidized bed? Medicaid? If step dad had gone into a nursing home (Canada so rules are very different), it would have cost $37.50 per day.