Has anybody else had difficulty having a loved one being in hospice in your home?

My dad was on Hospice at Home. HOWEVER, our family dynamics were much different. Caring for someone with dementia is very hard. I'm just starting to realize that my mother in law has had it for some time & I didn't notice. MOST facilities offer hospice, while a patient is in a facility. That way, the rest of your family is satisfied that she's with Hospice & you don't have to see it or live with people in your house. PLUS, hospice doesn't provide 24/7 care. You & your siblings/mom would still need to pay for all of that. It's better to keep her in long term care with Hospice.

this will sound harsh but if your siblings are pushing for this, tell them to pick which house of "theirs" is the mother going to spend her final days........but you are not emotionally/physically capable of doing it. And why not just let her in the long term care place? My father also had dementia and was in a nursing facility for 6 years....when his time came, the called us as a family to come in to see him. they made him comfortable and he was not awake anyhow. so why bring her home, the move alone might do her in before she would even settle in the home. Let her be where she is and visit when you can..........otherwise, tell siblings they can take your mom this time around. wishing you luck and get some help in dealings with your own health.

Good for you! You know what you don’t want. Stick to it! Start with funeral arrangements - or delegate that to one of your siblings. You have done a lot !!!

After reading the various responses, please stay strong and do not be "guilted" into doing what you are unable to do.

I cannot imagine taking someone in your mother's condition from being settled in the nursing home with hospice care to another location, in this instance back home.

It is difficult to see the decline in my mom (96) over the last few years we have lived together. Right now, she has more and more short term memory loss and repeats things frequently. We have even gotten to sometimes laughing about it, because after about the 6th time, I get a bit exasperated of re-explaining, and tell her ok that's it, no more questions today. She and I both chuckle.

But when she becomes to the point as your mom and not aware of surroundings (maybe me), it will devastate me, and I'm pretty sure she will have to be in a nursing home. I, too, would be unable to watch moment by moment the deterioration. So, no, do NOT let anyone guilt you into doing something you know you are not able to do.

"That doesn't work for me" is a complete sentence.

Sounds like you need professional counseling. Why embrace insecurities? Time to get it together!

I am so glad you are putting your health first and also the needs of your mom by keeping her in NH with hospice rather than bringing her home.

yankeetooter: My statement will be a moot point since I'm only able to view it five days after your post, but do not let your siblings control where your mother is housed.

I am also an introvert and just got out of a long term care situation. Stand firm and tell them no. It is so much harder than you imagine it to be. If they want her home so badly, tell them it will have to be one of their homes. Period. End of story. Stay strong.

Most nursing homes have a contract with several different hospices. If your hospice agency wants to bring her back to her house in order to have her as a client, you can choose a different hospice that does have a contract at her long term care facility.
You already know how hard the 24 hour care is. Hospice may promise 12 hour care, but may not deliver it. Marketing team and clinical team are different.
Good luck, this is hard place to be in.

It’s not horrible.

Hospice stays for brief intervals. Two friends with dying spouses & hospice relied on finding things to do because caring for and watching helplessly was too much.

One burnt out caregiver spouse hired 24/7 help.

The other situation was sudden and my friend wanted a nursing home but with no visitation (Covid), leaving the family member to die alone and confused was untenable. (Unimaginable so many had no chance to say goodbye last year). Home worked b/c family members took shifts and it was a few months.. My friend was terrified it would be longer and family help couldn’t be sustained.
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I assume a sibling has POA.
For what it’s worth, here are my rules for negotiations.

#1 Seek to understand.

What’s really going on to cause a change in status quo? Is the problem financial or emotional? If it’s financial, is the choice mom comes home or selling her house to pay for care. Which sibling agrees with what decisions and why? Do they think you’re living for free at mom’s house so you should give free care?

#2 Communicate with compassion and logic rather than frustration and careless words.

#3 Take ownership if you don’t follow #2 but don’t expect it of them.

#4 Document, document, document.

Journal. Add dates and details even if it’s a bullet list. It documents events and state of mind.

Send emails instead of calls. It lets you think instead of react. Email the POA/siblings to say you all love mom but mom needs to stay where she is because you do not agree to be her caregiver, you’re burned out and cannot guarantee her care or safety. (Which is true, isn’t it?)

Save the email replies. If the reply is a call, send an email summarizing the call (just to make sure we’re on the same page … and that documents the call).

If the POA still wants mom home, email the director of mom’s nursing home and advise them of the situation. My friend said nursing homes can’t release a patient unless the home environment offers appropriate care.

Take screenshots of this post and the replies to prove you are concerned about this before mom is released.

If the POA brings mom home without a hired caregiver, send an email reiterating you are not the caregiver so POA needs to hire care or let mom go back to a care facility. Email the facility director as well.

Tell hospice you are not mom’s caregiver and cannot guarantee her care or safety or even be home to answer the door. If that’s not enough, leave when hospice arrives. Stay away for hours. Let the hospice worker explain how an hour visit became four. If they talk to you, reiterate you are not the caregiver and tell them to contact the POA.

#5 Acknowledge different points of view and concerns but don’t engage is useless conversation.

People need to know they’re being heard even when they refuse to hear but there’s a point where the conversation becomes an energy sucking time sink. If the conversation goes in circles, email is your best friend.

#6 Plan a strategy and gather allies.

The goal is a consistent message and digital or paper trail so you have evidence. Then, if necessary, you can call your county health department or 2-1-1 or a lawyer to get help advocating for you and mom.

#6 Expect contentiousness. Look for potential opportunities and land mines.

What would the POA do if you say you’ll move? Call your bluff? What about if you say you’ll be out of town and leave for a week at a time? Will the POA get nasty and try to evict you or charge rent? Would the siblings let that happen? Can you get eviction protection? Will you have a relationship with siblings? Is that okay?

#7 Don’t feel guilty for having limits. Life isn’t fiction; you’re not a superhero. (Seems your no caregiver siblings set boundaries. So can you.)

#8 Breathe.

♥️ 🙏

With hospice care in the home, your life and level of privacy will change. You’ll need help with caring for your mom as her illness progresses. That means more people coming to your house. I’m an introvert and I absolutely hate having so many strangers in my tiny apartment. Privacy doesn’t exist. And from the many stains on my carpet throughout the apartment shows that people don’t care about my home. While it is noble to care for her in her home, be prepared.

Hospice does NOT provide hands on care 24/7 or even for a few hours. They assist the family. You need something - you call and wait and wait and wait. They come on their schedule. Their thinking - since patient is dying anyway just keep them comfortable - translate keep them on drugs to be quiet.
They do not change bandages - will change bedding - but won't be there every time you need it done.
Basically nurse checks vitals once a week - rest of the time you have a Aide stop in once or twice a week and a bath once a week.
Some may provide more service, but they have multiple patients - and with Covid I would not want anyone coming in my house who had been in multiple homes of sick folks during the day/week.
If you and siblings can afford to pay caregivers 24/7 for Mom to be there - great.
Otherwise it is not something 1 person can do (with sibling just dropping by whenever)
Tell siblings to pay for caregivers 24/7 or no deal. (If its just you there Mom will be better cared for in LTC)

YES. If siblings are pushing for it, each one should be signing up for an equal rotation to be there to support in order to keep you out of rotation. If you know your limits and they have been reached, make that plain NOW.

There will need to be a sibling there savvy enough to know when to call the hospice RN etc. But if you live there they will be nighttime needs. CHOOSE A GOOD HOSPICE SERVICE! -- hat responds and communicates well. All hospice services should have 24/7 emotional support. Ours told us that family tends to have those negative feelings after 10 pm. So we should not hesitate to call them on call. Either the Chaplin or Social Worker will respond.
My sister who lived with her kind of felt like you BUT I was the one doing most of her care during the day. In the end it helped my Sis with clossure. Good luck and there is no harm in letting professionals do it- esp with Dementia. Mom was aware of her surroundings which did make all the work worth it.

Hospice KILLED my sister! I do not recommend you leave her in there. Please look into in home care ...if not your home, perhaps another will step up to help. If she still has her own home, you could set up care there. There are programs like IRIS that can help her financially and instead of you taking on full responsibility ...everyone can help and she can get the care she needs. You can also be paid as one of her chosen care givers.

Hospice services can be administered in long-term care. Your mom is there already. It makes sense that she stay. My mom received hospice services from a community organization (through Medicare) and received long-term care in a nursing home (through Medicaid). The hospice nurse and CNA were great and very attentive. When they weren't there, the nursing home provided care. Mom shared a room with another patient, but when death was more imminent I was able to convince the nursing home to move her into a room of her own. You or another family member will need to make sure that the two organizations are working well together. There can be differences of opinion to smooth over. Without knowing your resources or state, you may also have an option of a hospice facility. I visited a friend who was in one for the last three or weeks of her life. It was spacious, had a small fridge in the room and a pull-out couch as well as a small terrace off the room. There are many questions concerning payment by the patient, Medicare and Medicaid that are part of the equation. In my opinion, hospice at home is the most challenging. It is also my observation that as my mom and my friend's conditions worsened, they move "inward" and comfort and attentive care is paramount. Knowing there is a doctor to consult and a nurse on hand to administer and adjust meds is key.

First…it would be a completely different story if your mother was still at home but since she is all ready in LTC , she should remain there UNLESS everyone especially YOU since you are the caregiver wants her home. Hospice and a 12 hr a day aide would not alleviate your having to do a lot of the hands on care. You would be also supervising the aide because some are good and others , not so much. Depending on the company , some do provide housekeeping type services as long as related to the patient - such as keeping their room clean, as well as washing linens and clothing. Also meals and cleaning up as relates to that and bathing .
My mom had hospice at home but when , at one point she was in a facility for rehab after stroke she had a room mate on hospice so I have seen this also. It was horrendous for my mom since the other woman, a long term resident was moved from her private room on dementia unit into the rehab bed for hospice..not sure the rationale. So , with only a curtain separation , my mother had to listen to this woman pass ..also the visitors in and out at odd hours since they allowed this for hospice pts. And then , hearing her last breaths , being there when family came in grief, and being left alone in the room until funeral home came . What a nightmare ! I think that family was okay with the care though. Also, the woman quickly went from walking around to being bedridden once hospice started - I thinj because of the medication .
Later, when Mom went on hospice , it wasn’t really due to a change in her condition, but because she just lost her will to live. Hospice in this case only spoke to one sister..who did live with her and help with her care although she had aides for 8 hours a day at least plus prior to hospice was able to use bathroom with assistance and my brothers would help with this in evening , she generally slept all night. Only times I saw her after hospice started she was sedated and not awake, likely from the morphine. When I was there hospice was never present and neither were aides so obviously any home care would likely fall to you Although might be different in your area. Also, even though they had been there earlier in day and said it would not be long for her - hospice was not there at the end..Just family and then the funeral home to pick her up.
I would advise you to ascertain what your rights are as to the house ASAP. IMO , there should be some agreement on this ..should have been done when you began caregiver role . Since you’re staying there and doing caregiving is what kept medicare from taking house ..seems like it should go to you but this may be a matter of law. Also, not sure if medicare was only involved in father and not mother , if this even pertains now.
good luck to you …and don’t be bullied into going against what you think is best..if sister brings her home , I’d advise you just visiting ..whether staying in your room or going to stay with a friend .

Yes I am an introvert and went through hospice with my husband at home who had a terminal brain tumor and a year later with my father in my home who had dementia. No one can tell you what’s right for you, but I’m glad I did this. The time we spent in both cases was precious. Hospice gives you a lot of help with managing it and the people are trained to know how to work with you in your home. The bath aid my husband had was a true angel. She helped me more emotionally than any other person during that time. When she came in the door she brought a spirit of peace and reassurance like no other. She even stopped by after he passed to see how I was doing. These were very enriching experiences and I learned so much although I wish it didn’t have to be under such sad circumstances.

HI
I had hospice come in when my mom had dementia and her health was were I couldn't take care of her by myself anymore. My brother was against it at first but he had a family and his home and lived about 10 min away from us and had misinformation about hospice until he talked to some of his friends and they told him how great they were. I had experience with a friend whose mom lived with her and I saw how wonderful hospice was with her mom. I can tell you that it took such a load off of me once I got them to start coming over. They always called me and let me know when they were coming over.if I had a Dr's appointment for myself or there was something that I had to do I just told them that it wouldn't be a good time for them to come over and they would ask me what would be better for me and I would give them a time or we would choose a different day and time for them to come over. I will say that everyone who came to my friends home and my home were fantastic not only did they take excellent care of my mom but they took time to talk to me especially when I was having a hard time whe my mom started going downhill and I was upset. They talked with me and I started feeling better after talking to them. I honestly think that you will find they are absolutely the best group of professional nurses and aids you will ever meet. It's not like having someone in and out of your home every day. It's not like you are hiring someone to come into your home for 4 or 5 hrs and take care of your mom. You probably will have the nurse come over maybe 3x a week to check your mom's head and tell you what you should or shouldn't do for her or if ypu need to call the Dr concerning her medications ect. Then an aid will come over say 2 or 3 x a week and change her linens but won't wash them because they aren't maids or housekeepers . But they will give your mom a bath and just the things that will help her feel better. I think they will wash her hair as well.but I am not sure. My mom didn't always recognize them everytime they or actually anyone who came to see her nut my mom would act like she m ew them and they would always have to very nicely tell her their name several times when she was there. But mom always made them laugh when they were there. When mom got really bad off they told me that she probably wouldn't last until Monday and this was Saturday evening. They said her blood pressure was dropping pretty fast and mom had stopped eating or drinking for a little over a week. Anyway she was 100%correct. My mom went to sleep Frida night and she was very tired. I went into the living room because that's where we had to put the hospital bed. Anyway Saturday morning she didn't wake up but she was just too weak and started drifting in and out of consciousness. But she would look at me and smile when she was awake and mumble I love you and I would tell her the same thing. Anyway Sunday night she went to sleep and that was the last time I spoke to her before she went to sleep. I called the hospice nurse at 3am .they have 24 service. I told her mom was moaning like she was in a lot of pain and she told me to increase the medication they hadeft with me so she will be comfortable. So I got the medication and with the dropper I put it under her tongue because medication enters the body quicker if it's put under the tongue. So at 9:40am Monday morning she passed over. The nurses happened to come by at 9:45 just to check mom's blood pressure only to find she had passed over. I was crying my eyes out and about 5min later the aide happened to show up and she started to help the nurse clean up and the nurse had to called the head nurse who had 2 pronounce my mom dead &then called the funeral home to pick her up. But they still handled my mom with so much dignity love .they had gotten 2 really care alot about my mom and they cried right with me but also comforted me because I was crying so much. I am crying just telling u about it. They r amazing.

If her LTC facility has Hospice beds and you can afford to keep her there, that is your or the POA's (?) choice. Your preference for peace and quiet and privacy is not a free ticket out of care taking. Many of us would prefer our privacy and are emotionally distraught at seeing our LO's decline. You can certainly choose not to do hands on care-taking, but acknowledge that it is your choice not to do so.

Hospice at home, if you were to be the primary care giver, does not involve a lot of people in the house unless you choose to hire additional care givers. In our case, a Hospice nurse visited for about 1/2 hour twice a week and an aide came once or twice a week if we chose to have her come. That was all. I did the rest. We had no hired help and we did not use the Hospice chaplain
or Social Worker..

If your staying in the house requires by siblings?or by POA? that your mother be at home, then you will have to choose to either be care taker or to move out.

I am not unsympathetic to your mental distress as I am also an introvert of the First Order, but the reality is that you may not get to live peacefully alone in your mother's home just b/c you want to avoid the stress of facing your mother's decline and death.

Have her go into a Hospice care facility and don’t hesitate. You will be sole caretaker if she is in your home. My mother has been on hospice in her home for 2 yrs. They are great to come maybe 2 or 3 times a week to check on her, because she has breast cancer in both breasts. She also has chf. They sent a cna to help out, but she didn’t want that. She wanted me to do everything! Finally, my mother is at the hospice facility because I am no longer able to care for her. She is beyond my scope of care-giving. My mother only has weeks to live now. She is getting the care she needs and I am so relieved. They are wonderful and caring there. Be firm! Don’t ruin your health by letting others bully you. Do not do it! Period.

Don’t move her from the NH - hospice will go there and you and your family can surround her there as she passes (unless they are in lock-down - in which case home may be a better choice). Who has POA? That is the person who should make the decision. If your family wants to overrule you, then they will have to provide the supervision and care. Sounds to me like there may be legal issues over her house and they want to assert your mother as the owner while you are a “tenant”. They may fear you are trying to keep like bing at the house after your mother passes. Sounds like they may have other ideas.

How long has your mom been in a care facility?
You moved in how long ago to take care of her?
Can this be about the inheritance of the house? Since you state after two years taking care it became yours? But it is still in your moms name as I understand?
How much are your siblings involved in the care for your mom, are there visits?
Going on hospice can be days, weeks, months or years….that is a huge impact on a caregiver. Not even only the physical help or attention, also everything around it…..

Do the siblings know that you might gain rights on living there? What is there intention with this move?

Can you find somewhere to go stay away from the house? That would be my first priority and then I'd make it crystal clear that I won't be there to do the caregiving. Then make good on your threat.
Can you go stay with a friend?

tayloruk. i cannot reply to your "Prayer will not help.........." That is negative and not at all true. Prayer for strength and fortitude helps tons, been there done that. This is a SUPPORT SITE!! SHINE A LIGHT!

Hospice comes to nursing homes and nursing homes frequently do end of life care for their residents. I don’t know of any hospice program that performs a full spectrum of in-home services such as one of the posters described. Having a long term care patient die at home without 24 hour support from a professional medical team does not seem like a good idea at all and certainly not if you’ll be expected to be the primary caregiver and handle your siblings who plan to stay at the home you shared with your mother at the same time. If you have been sharing your mother’s home, then it’s been your home since your mother went to long term care. Put your foot down and say no to this foolish plan. If they bully you, tell them they can execute the plan and make all the arrangements while you stay in a hotel. I take it you can expect to be evicted from your mother’s home after she dies so the home can be sold to split the proceeds among your siblings. If this is the case, start living for another place to live now.

My mother wanted to die at home but it was her narcissism driving that decision.
It didn’t pan out. She went from assisted living into Hartford Hospital hospice for 3 days, then she passed.
Even then I was alone with her, and needed to call the nurse to make the “death rattle,” quiet down because I was freaking out over it. I know she’s not in distress but I was unable to endure it.
The rest of the “family” we’re calling their lawyers waiting on their “slice of the Will.”
Not one came to sit with her.
The Chaplin and nurses were terrific.
I know that sounds mean but once you hear it and you are alone as they “pass,” it can be very scary.
Don’t let your siblings bully you into something that makes you that uncomfortable.
Hugs for all you’ve done sweet spirit-
#Godspeed

Also, be firm with your siblings. If you are the primary caretaker you’re not obligated to open the door at all hours. This isn’t a dive bar or hotel. I know how pushy relatives can be, I don’t have siblings but I have extended relatives who love to give their opinions and criticise even though they are observing from a distance. Stand your ground and consider talking to your doctor or lawyer. Your mom might need more care than a hospice.

You most certainly should feel no guilt over how you feel about this situation. I have not been there, but I can say it would be intolerable and unacceptable for me. I cannot cope with people coming and going, or even family coming for more than a meal, and totally understand the stresses this will put on your health.
If she is in long term care then I can see no reason to move her - which may well be upsetting in itself for her. She is not going to be aware of the fact this was her home, for dementia sufferers, the idea of home (if they have one) is not usually based on the last place they lived but on where they grew up, or where they spent a period of younger life.
I fail to see why your siblings would think your mother should be uprooted from where she is just so she can die in a house they think she should be in. It is selfish to think of moving her to fulfil a need they have. Your mother should be allowed peace in her final days/weeks/whatever not be used like a pawn to satisfy their desire to see her in a home she has not lived in for the last three years.
Stand your ground - they will probably never understand your own health issues over this, or the way you feel about people being around, but that doesn't matter here, what matters is mother's comfort and stability with people who can care for her in the environment she is used to.
I'm very sorry to hear that this is being put on you, its a great pity your siblings do not care for you as much as they care for their own views. An understanding of your situation would lead to a much better relationship - but you clearly KNOW what you can deal with and I hope you can find the strength to stick with it knowing you have loved and cared for your mother as you have been done.

I’m an introvert and I understand your sensitivity and need for solitude. If there is no other choice what you can do is to give yourself some space and boundary within your house. I don’t know the size of your home but I’m in a similar situation ( my dad is in an advanced stage of pancreatic cancer, I’m an only child, we both live in the family home, which is a fairly small split level) and when things get too fraught and I feel overwhelmed I seek refuge in my car, backyard, or room. I’ve learned to steal away moments—when dad is seen by a nurse I take this time to go for a walk or grab coffee. Also, when he naps or sleeps early I take that time for myself, to paint, write, exercise, invite a friend over. Sometimes we have few options but such trying times can bring out our creativity and resourcefulness.