Is it realistic to think about getting Mom home for her last months? What do I need to consider?

I took a chance with mawmaw, long story but ill cut it short. My mother her only child died 2016-mawmaw took a fall, broke her humeral head/shoulder. after that she was scared to walk. did rehab at hospital did ok but still hard to walk- she was very indepenent before the fall. After her stay was up at hospital they stated discharge to Nursing home for more rehab after day 16 she got to sick in there- severly dehydrated. we could not visit due to covid- so bad off she needed a PICC line and so on. it was bad. we deceied to take her its hard and very stressful she is so happy home- shes on hospice but in great spirits. i never would have thought i would have to wipe her and clean her bc she is still not walking- she lost all strenth in legs.

i dont know what we will do but hope to get a plan B if we get to tired. the social worker would help us but she is not going back to the NH she was in as we filled a complaint with the state- she also had bed sure stage 2 from the nh that was not there before.

Be sure you have not committed to take financial responsibility for her. Medicaid should only have access to your mom's assets, not yours or any other family members.

Your desires are coming from a wonderful place within you. Ideally it could work but the reverse is also a possibility. I lost a cousin a few years ago to stomach cancer. It was not technically pancreatic. She had beaten breast cancer around 5 years before. She was doing chemo until close to the end. She had a nice home with her only child in the same town. They were very close.

Hospice had been set up for her at her house. There was plenty of help and she lived in a major city with lots of medical resources. Within a short period she switched to hospice within a hospital. Her pain with accompanying symptoms became too difficult to manage at home. While it was not a total reversal at the hospital it became much more manageable there. She passed in her sleep within a few weeks with her daughter at her side.

I understand your wishes and they are admirable and perhaps possible. I would just advise you to have a plan B in the event they are not. If you decide on home then research the alternative and how easily that could be done as the pain towards the end could be very difficult. My cousin became much more comfortable in the hospital even though that had not been her wish. She was 69 when she died.

Your mother is very ill and will require extensive medical care. I am not sure you are equipped for what is sure to come. Check out all options and be prepared to consider the best ones. But be sure what you are getting yourself into. And I have a question - you said costs are $11,000 a month and you have to pay back Medicaid. I don't know what this means but somehow it does not make sense to me. Get yourself an eldercare attorney and look into this so you know what is going on. Something does not make sense. If she as assets, NH will take them and when they are gone, Medicaid pays so why are you paying back Medicaid??????????

Seems she needs nursing care by professionals round the clock. Check into costs for this before making any arrangements since it will be expensive.

I would be very concerned if her medical/pain management needs could be managed at home. Can you discuss this with nurses?

Imho, you should think long and hard about making this difficult move. Prayers sent.

Hospice is generally right, but not always about length of time.

Try to make sure, the best you can that it might be a longer time period.

I had a friend in California. The doctor gave her less than a month to live. Hospice was called in as she was still in their home. Three years and seven months later she passed away.

When my son was dying of aids i took total care of him in my home. There was no question of him going anyplace else ... even if my husband had said no which he didnt. He welcomed my son into our home.

at first my son could walk to the living room then gradually stayed longer bed till he died. I slept on a mat on the floor. I slept when he did except for some times i spent with my husband who worked a regular job.

he lived 3 months from the time he entered in the hospital till he died.

i was 52. He was 32.

it was virtually exhausting, i think
due to stress more than anything else. I slept on a mat on the floor. I slept when he did except for some times i spent with my husband who worked a regular job so wasnt home all the time.

yes i would do it again but i dont know how many times i could do it since im older now.

i think it all goes to health, age, and determination of the caregiver.

Do what you want to do. It’s your decision. If you feel that you are able to handle it emotionally and in practical terms, then do it.

Wishing you peace during this difficult time.

Two experiences:

I did this for 4 weeks for my mother at her apartment, alone. In-home Hospice wasn’t an option locally. I slept on a trundle bed just outside her bedroom door, and woke when she did. The last week that was every 4 hours round the clock, and she was always double incontinent. I’m glad I did it, but I couldn’t have done it for much longer. Not 3 months.

My sister did it for my BIL. She is disabled, and they have deep pockets and a large house. They had 24 hour in-home agency care, with an RN on the night shift to give the medications. The worst lasted just over 3 months. BIL fell and broke a leg, which was not appropriate to treat, so he was totally bed-bound. She too is glad she did it, but it took a lot out of her. Their home was a lot like a nursing home, carers always there almost like family, and one particularly nasty bit was finding that one carer was stealing big-time.

Perhaps the practicalities depend on why your mother is dying, how reliable the time frame is for the end, the physical arrangements of the house, and the finances. Best wishes at a difficult time.

Get "Karen" she has a whole lot of advice!

Forgoing the 24 hour care aspect, I am so grateful that I brought Mom home for her final journey. She wanted so badly to go home and the Nursing Home couldn't do any more for her in terms of rehab, therefore staying there was not an option, unless we depleted all of her assets. We brought her home and I was able to spend quality time with her. She was very alert and she and I discussed her leaving to go to her "new world" (her words) and her "new body" (her words). If I had not brought her home, I would not have had the opportunity to say goodbye and share her final moments with her. She went fast - 8 days, but I would have regretted it if I had left her in the NH as opposed to bringing her home. Being with her those final days were precious and had I not brought her home, I would have always regretted that decision.

It can be reisyic but you need to open your eyes wide and see this is not easy to be the soul caretaker. Hire home care for a few hours or couple of days. So you can get away and take care of yourself, do household errands.

A friend's mother fell at her NH during COVID restrictions and was taken to the hospital from which the daughter was able to check mother out into her own care and take her home. With both daughter and hired care taking, they had a peaceful and comfortable summer together before the mother died and it was worth every penny.

As long as you create a strong support system to help you care for her, it would be a wonderful idea. You may be able to find people in your community for less pay than an agency to handle the 24 hrs with hospice nurse coming in to help with the meds and keeping her comfortable. Having her home would probably be good for you and for her if you can swing it.

Hello, both my mother, and father stayed at home while I stayed there with them to take care of them with hospice coming into the home at first a couple times a week, and as needed they came more frequently.
I was running a business at the time that had to be put on hold, I didn't have a lot of money saved so that part was hard.
Hospice was something I resented at first because I didn't like the idea that they said my parents were dying, and didn't have much time left.
Ultimately, my parents got to stay in their home with family around until the end, and the people from hospice by that time actually felt like family.
They are very unique individuals, that truly care, and know how to help people through this phase of someone's life. I couldn't have kept my parents at home without them, and will never forget them for their efforts, care, and graciousness.
If you have a way to stay home with your mom, do it. It's not going to be easy, but you'll feel better knowing you did all you could to help her stay at home through the end.
If you can't do it, at least you know you tried your best to bring her home.....Best of luck

You would have to do the care. Hospice will only provide an aide twice a week for a half hour. She will require 24/7 care. If you will not do that, keep her where she's at. This includes bathing, moving her bowels, diapering, feeding, skin care, hair care, mouth care, range of motion, and so on. You CANNOT leave her there by herself. Someone has to be there all the time.

IF you hire someone a sitter (one who does NO hands-on care) is about $20 an hour. A CNA (does hands-on care) is about $30 an hour. If you hire off the street you do not know who you are bringing in the house AND they can claim to hurt their back in your estate and sue. At least an agency they have Workman's Compensation insurance so they can't sue your estate.

You need a lot of support systems if you opt for home care including other family members willing to help. Hospice will provide you all the home needs like oxygen, hospital bed, bedside table, wheelchairs, Hoyer lifts, diapers, ointments, dressings, and so on. But you are mostly responsible for her care.

Since she's already in LTC, I'd be inclined to keep her there. It sounds like a huge challenge and not too many positives, IMHO. I understand most people WANT to be home, of course, but she's not home so moving her back and setting everything up is a lot of work and caring for her and coordinating her care will also be a lot of work. It would not be wrong to bring her home, just think hard about the work and there is no guarantee that it will be 3 months. Could be 1, could be 12+. For 3 months, it wouldn't be doable but much longer just makes it that much harder. Who knows??

Yes!!! We did it. My only regret was that we did not do it sooner ! It was not easy, but the look on her face the first night she realized she was home , and the calmness she had ....unlike how she was at the ltc.....was worth all the efforts during the last 4 weeks of her life. I had watched 3 people pass away there during her time in ltc, and it definitely was not how i wanted my mom to live her last weeks!

My father, aged 90, had been in a nice MC facility for almost a year when covid and the lockdowns began. He too was on hospice, but his prognosis with stage 4 cancer and Alzheimers was 6 months give or take. 2 months into lockdown he lost the drive to get up and struggle through another lonely day. Window visits with a phone in hand no longer interested him. My brother & I decided to get him into a handicap accessible apt. With 24/7 help. We agreed that no matter the cost, whatever $ he had left it’d be worth it. It was!! Hospice is incredible and brought nurses to Dad so we could avoid crowds at Dr. offices. My dad was able to get outside, take walks, have company and feel cherished again. Before that he’d ask why I’d put him in “the loneliest place on Earth?” It broke my heart! We went through a few caregivers before finding our “A” team, but were so happy to have Dad out. He lasted 7 months, had his 91st b-day with us & died last month at home with us all right there encouraging him to go ahead and join mom again. It’s expensive, and not everyone can do it, but it was worth every penny to see my dad wake up wondering and looking forward to what he could do that day with me or his favorite caregivers. He started whistling again and was happy, even though AZ progressed and made him more forgetful.
I do encourage you to bring your mom home! Be sure and have the help you’ll need though. Next to impossible to do it all yourself for any length of time. Good luck and God bless/

My husband, who had brain cancer, was home for the last two months of his life. I had support from hospice and paid aides, but it was not always 24/7. We were on our own usually from after dinner until breakfast the next morning. But until the last week or so, someone else took care of feeding, bathing, and dressing him. He stayed in his hospital bed in the living room and had someone there - a hospice aide or family member - all of the time for companionship.

It was tough, but what he wanted and I'm glad we did it. He was much happier there than he had been at a nursing home. He died at home with me holding his hand and an aide at our side. After he died, hospice came in and helped me make the necessary phone calls to have his death legally pronounced and his body moved to the funeral home for the cremation we had pre-arranged. And a chaplain from hospice came to pray with me. I don't have enough good things to say about hospice support.

Most all want to stay in their own homes where they are the happiest and feel more love.

Talk it over with mom and if that is what she wants too then do it.

My 96 yr old Dad with dementia never wanted to go to a Senior Place and I promised he would be able to live in his own home.

So I hired 24 7 Care and he continues to live in his own home.

You should deffiently bring your mom home.

I installed cameras so I could keep an eye on dad and the Caregivers.

I had my son install Nest Cameras which work well and easy to install.

I feel more comfortable that I can check how he is doing 24 7 from my cell phone or computer.

Do what you would want done.

She should be able to do exactly what she wants with the short time she has left.

You can hire 24 7 care for less money than you are paying now and she'll be on Hospice Care which tge Insurance will pay for Nurses to come see her and Aides to bathe/Clean her 2-3 times a week.

In her own home, she'll be able to be free to listen to her favorite music, have visitors, eat or drink what and when she wants and not have to wait for someone to help her since most places are understaffed.

You will not be sorry you let her die in the comforts of her own home.

You are doing such a great job managing everything! I’m sorry she’s so ill. You already have all of these great other responses. One question I’d add is to what extent she will be able to notice and experience where she is. But perhaps the act of being moved home would be worth it.
Bless her and bless you, best wishes.

With Hospice you would have the supplies and equipment that you would need to provide proper and safe care for her (and safe for you)
You would have to provide the extra caregiver(s) that would be needed if you need help. (and you probably do not need caregivers 24/7)
Hospice would also have a Nurse that would come at least 1 time a week to check on her.
You would have a CNA from Hospice that would come at least 2 times a week to bathe mom, change bedding if necessary and order supplies.
I kept my Husband home and did quite well (he was at home the entire time and on Hospice for almost 3 years) He was easy to care for (Alzheimer's/Vascular dementia) but my house was built accessible so it was easy for me in that respect.
Caring for him was the most rewarding act, sometimes the most difficult (watching the man I love disappear) but I do not regret my decision to keep him at home.

My dad’s time at home with hospice services started out smoothly enough, but when his needs got intense it was clear that we couldn’t maintain that level of care for very long at all. Providing care 24 hours a day is beyond hard, I hired extra help and they were wonderful, there were still all manner of expected things that happened. It’s impossible to anticipate and prepare for each situation. It was doable, but he lasted less than two months, much longer I can’t imagine that we could have kept it up. I’m sorry you’re going through this and wish you both peace

You could certainly bring her home under hospice care. They will provide the hospital bed, oxygen, any supplies needed, along with any medications needed as well. Now at first a nurse will only come once a week to check her vitals and such, and an aide will come to bathe her twice a week. So as you can see, you would still need to have 24/7 care lined up for her, from either family members or outside hired help. It's a lot of work, I cannot lie, but it most certainly can be done, if that is what you really want. As hard as it will be, it would still allow you to be with your mom in her final days or months. And you can't put a price on that. May God give you the strength and courage to do what's best for your mom.

Cwillie has great insights. Would you have helpers to come and give you regular breaks if your mom stayed on for 6 months? No one can really say how long...my friend's mom was told 3 months and when they brought her home for hospice she lasted 18 months. Not sure about the financing of your plan...maybe best to consult with an elder law/estate planning attorney who is familiar with Medicaid in your state. Here is a post by someone who is struggling with having her LO in hospice in her home (recently posted). You can read about her experience as one to consider:

https://www.agingcare.com/questions/home-hospice-mother-in-law-declining-physically-cognitively-how-to-steel-yourself-for-dealing-with-d-465569.htm?orderby=recent

The people I know that did this had a lot of people willing to do hands on care and 2 nurses in the family, they also had very deep pockets. Consider your Mom's quality of life very carefully, there are many things that can be accomplished in a (good) nursing home that you just can't do in the average house - having access to a big spa bath was a real positive for us, the ability to be out of bed and moving about the facility as well as having some possibility of companionship and entertainment (minimal as it was), and the reassurance of an RN on hand 24/7 is huge. The other side of the coin is just being HOME and somewhat autonomous, which for your mother may more than offset what is not available, but it is a huge burden for the caregiver (and the timeline is never certain).