If someone did do that, what agencies did you involve and get help from? My dad and sister do not want me to bring mom home to my house. But, they are not driving 45 min each way to visit 3 times a week and seeing mom and what she looks like and the changes that are occuring.

She has frontal temporal dementia (different from alzheimer's) no longer walking, talking, dressing, bathing,eating independently, toileting.... She has recently been put on seizure meds but she does not have seizures.

She cries, but has no tears, dehydrated? She was asleep with her jaw wide open, not her mouth, but her jaw. you could see her jaw bones wide open looking at the outside of her face, they were stretched that wide. There is so much but I have to stop for now. I just feel helpless. I don't want my mom to die there without family. I do not want her to be without hugs, she hasn't had family around her since this covid 19 started. I hurt, but nothing like she does. She is hurting so much. It is just not right. I had the nose swab, the deep nasal swab and Neg for the virus. I wanted to see mom the moment I got the results which was less than 24 hours later, but couldn't. That would have been a safe time. I live with no one, I had not been around anyone... anyway.....

Has anyone taken their loved one home after having them in a facility? What was it like? What agencies did you have involved? Were you glad you did it?

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I did. It was an agonizing decision to put her in a facility with memory care in the first place. She was in there for 6 weeks until I could no longer visit her due to novel corona virus. I just couldn’t live with myself if she died there without being able to hold her hand or do her hair, lay next to her, etc. I brought her home and had a live-in couple stay in our converted garage (it’s really nice) and paid them well. Unfortunately that situation did not work and now we are going to start with an agency to send someone to take care of her while I go back to work.
It’s extremely difficult to take care Of another adult even though my mom is relatively easy because she barely speaks and she has little mobility (comes with her form of dementia). But it’s been just me for a few months now and I’m exhausted. I don’t talk with too many other people and I basically prepare food, clean, and tend to my mother’s daily care needs which includes helping her to the commode about 12 times a day and most of the time she doesn’t even urinate - it’s very frustrating. She urinates a good amount when she goes, it’s seems more like a habit than an actual need. I’m going to be going back to work full time and when I get home, it’ll be the same routine - meal prep, clean, clean her and hopefully sleep.
I don’t know if you noticed, but there is nothing in what I wrote about any time for me. It’s a very lonely and demanding “job”. Do I feel I made the right decision? For now yes, my mom is a brilliant woman who worked hard and was always in the right place at the right time so we have options for her care, I don’t know how long she’s going to live and her money won’t last forever. Plus, I cannot take care of her for another two years - I feel like I’ll die before she does. I’ve been caring for her for over 5 years now even though in the beginning it wasn’t that difficult; I still had a life. But it gets choked off little by little until you are like a hermit caring for someone else’s needs and very few of your own.
This may seem cold and unfeeling, but when it’s possible, I will take my mom to the same facility. If she had been there for years before the virus took over, she’d still be there (probably) because the staff was very kind. It was just bad timing - my mom was new when this hit so none of us got to appreciate each other as well as we could have had she been there for awhile.
If you will be the one to take care of your mother, ultimately, you have to decide how much are you willing to do, to give up, to sacrifice in order to quell the guilt of her being in a facility. My mother was better cared for in many ways in the facility, but she was not loved and they couldn’t be next to her enough to prevent falls (my mom was as there for about 12 weeks and she fell at least 8 times).
So if you are trying to come up with a decision based on your driving time to visit your mom 3 times a week, it’s not going to be easier taking care of your mom at home - it is far worse at home, because you’ll have no time for anything but your mom - don’t romanticize it - it’s HARD. One way or the other, you have to do what you feel in your heart is the right thing for you and them and those two options are, to a large degree, diametrically opposed.
I wish you all the best.
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If you bring her home and find you are unable to provide the care she needs, you may have difficulty getting her back in a facility at this time.
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MaryKathleen Aug 2020
I agree with you.
I just brought my mom home last month. She lived with me for 5 years and I finally couldn’t do it anymore. She was just always angry all the time and it seemed I couldn’t do anything right. She was in the assisted living for two years and when the covid hit I was no longer able to see her. I would visit her everyday......some good days some bad but at least I could always go home and get a break.
In June she was hospitalized for pneumonia and after 4 days they released her back to the AL because doctor said she was safer there. A week later she was hospitalized again with double pneumonia. After about a week they sent her to rehab. It was a rehab from hell.....,I was never able to see or talk to her, they always had an excuse. I finally went and demanded to see her. She looked HORRIBLE!!!! Wearing a dirty shirt that wasn’t even hers and a blanket wrapped around her bottom. They said she had no clothes. They had lost her clothes!!!! She was so drugged she couldn’t talk. I cried the whole way home and couldn’t sleep that night. I woke up the next morning and called them and said to have her ready I was coming to pick her up.
It has been the best and worst thing I’ve done. ITS SO HARD!!! You can’t do it by yourself, you will need help! Your life will change, you are locked in to a life of all day/night care giving. I love my mom so much but this is tough. Think long and hard. I get exactly what you mean by not wanting her to die alone without family but it’s hard sometimes not to want your own life. Moms 96 and I don’t know how much longer she will be with me...... we both need peace and I can only pray that God will be merciful to us both. Prayers you find what is best for you.
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The only family I know who successfully brought a loved one home with such a high level of care needed could only manage that because the whole extended family was on board, one daughter was a nurse, and the person in need had deep enough pockets to pay for abundant extra care.
I lost my mom almost 2 years ago so I was able to visit daily but I never got beyond feeling some degree of anger and grief when I visited her in the nursing home and I KNEW that I didn't have any other choice because I had already flamed out trying to care for her at home - I can't imaging the impotent rage and sorrow you must feel.
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I think about the same. My husband is under hospice care in a SNF for Early Onset Alzheimer’s. With covid, outdoor visits are about once a month. I miss him terribly, but then I think what would life be like for him at home. He needs a hoyer life (2 people) to get in and out of bed. We have a walk in shower, but not sure the doorway is wide enough for the hoyer or his Broda chair. If I want to Be able to shower him, he’ll be stuck upstairs. If I want to Be able to take him outside, no showering as there’s only a half bath downstairs. Will I be able to get reliable 24x7 help? With covid I worry about that. It was nerve wracking when he was able bodied and I had a companion with him while I worked - calling out sick, arriving late, etc. what happens if someone doesn’t show - he needs at least two people to move him from bed to chair. He developed blood clots during a hospital stay. If his oxygen drops, will I be able to get him oxygen right away? I look at the amount of things he has wrong with him, and I wouldn’t want him to be in discomfort because I have to wait for a hospice or VNA nurse. Even though it breaks my heart, I think he’s in the best place for care. Best wishes for your decision - it’s not easy. ❤️
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I've had the same with my Mom. We're in Maryland and I've seen my mother only 4 times since February. She's dying and I've also considered bringing her home, but here is why I talk myself out of it:
1. My mother is under hospice but that is just a few hours weekly. You will need nursing care unless you are prepared to bathe, change diapers, and lift your mother off the floor when she yourself. That costs in Maryland 13000 a month. I saw someone post on this thread they've paid up to 16000.
2. Most dementia patients have locational dysplacia which means she will have a huge readjustment period when she gets to your place. If she is sundowning, be prepared for that. I was unaware my mom sundowned until last year when she was in the hospital and they were frantically calling because they couldn't deal with my mother.
3. I love my mother as you do and would do anything for her, and sometimes I'm pretty sure that I could do a better job than the facility where she is. Then, in my wiser periods of humility I think about the challenges even experienced medical care have dealing with dementia patients. If they are struggling, I'm sure it would be even more difficult for me.
4. I work full time and run a business. Like many people on this site, I would have to quit those occupations because caring for her would be a full-time job.
Everyone has their own situation, and this is not really advice. I just wanted you to know the mental gyrations I undergo almost daily when I can't see or talk to my mother. We are going through money so quickly right now with her in dementia care that I am facing her outliving her resources, and so having her live with me will be a certainty if that happens.
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KlynKS Aug 2020
I do the same with my thoughts - back and forth all day. I think I'm losing my mind. My mom is in assisted living, Alzheimer's, Covid lockdown. I want to bring her home because they are having trouble knowing what to do with her sometimes. But, could I do better for her? Probably not. Her decline has gone much faster since March and she doesn't know who I am now. She asks for her mother and father. It's gut wrenching. I wish I could stop it, but dementia is a one-way street.
I would not bring your mom home right now in her condition. She is high level of care. I work in a nursing home as a supervisor. It is such a hard hard time without all the family’s that often help care for there family members here is what you should do. Call the social worker and ask for a meeting with one of your moms nurses her and the Activity Director and the dietary manager Tell them your feelings as to not being able to see your mom and how you are struggling with that tell them you are concerned and ask them each what her care plan looks like What are each of them doing if she is dehydrated ask them how often she is drinking, seizure meds are used to treat many conditions ask the nurse to explain what the med is for, ask activities what they are doing and if you can do a FaceTime call with your mom. Ask lots of questions about the jawbone how she’s eating and ask them what there policy is for end of life visits. You will not have to then worry you will be able to see your mom and be with her at the end of her life and you will know what her current condition is and who is spending time with her. I think this meeting is what will make you feel more comfortable and make her nurse take notice to some of these things that you pointed out. I really don’t think that it will be healthy for your mom to be moved right now or that you could sustain the level of care she is going to require. I’m so very sorry for you there are so many who are just so torn right now. The staff in most nursing homes are beyond shocked by were we are today with this virus we love our family members and our residents right now where I work we are really doing everything we can to try and fill some of the voids but we all feel a great sadness that we will never fill it. It’s just so quiet we just are not use to that. Even our Therepy dogs and pets can’t be in the home. I really wish I could tell you to take your mom home but unless you do hospice I know you will be all alone and there will be times and moments when you will be frightened and not really know what to do. I don’t want you to have that burden for latter. Just share your concerns in a nice way with the staff. Most who work in this field are strong because so many need us to be but more then that we are super softies and compassionate. I would listen to you and do everything I could for your mom after reading this post if she were my patient. God Bless you!
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Yup me too..and word for word what you said is the story here also..the jaw lock..I got her to close her mouth with vanilla yogurt on the tounge ..if someone would take the time to really deal with will see it’s the brain forgetting to close the mouth,,massage the jaw..put a tiny bit of food in mouth ..just a taste to activate taste buds..I take care of my sister with frontaltemporal dementia..I could go on an on because I have an endless amount of situations and cures and just plain witnessed neglect of hospitals and nursing homes. On that note iam outraged so iam making the changes myself,, here’s what’s happening!! No one is going to tell me I can’t see them !! I can get all the protective gear there wearing and I can even get better suited extra masks ,plastic shield full body suit I did and in I went !! The horrors of the care I saw..Everyone’s using covid as a excuse to give neglected care and pass the blame from themselves to the president.. I don’t know a single mom who diddent know what to do for a sick family member,,that now needs a man or president to tell them how to keep a family member from spreading germs..Back to the nursing home,,why if our medical community is so stressed are the family members not allowed to suit up and volunteer to disenfect give baths hospitalized family not in covid care..I have one there and he was healthy for the most part ,,now has a breathing problem and a bed sore on entire back from being left there for 4 weeks of them telling us we can’t come there after out patient procedure gone bad..Back to the nursing home !!!sorry for the rant!!! But again the neglect of her and I was paying 8000 a month for her to NOT to be taking care of so home she came,,they tried to stop me ,they don’t want to lose that 8000 a month for doing nothing and not allowing me to check on I said I can suit up and wear two if needed so why are they not letting us in!! I bought her home an she is way better and it’s about a 700 a month expense for me now..But here’s a point all of us retired nurses and other medical folks should be able to suit up and volunteer to at least take added hands to caring of family members in hospitals not associated with corona.And take the stress off of staff..and then who would they stand up people and suit up and go to the homes and hospitals and see what I saw ..They won’t even know who you are everybody looks alike..forgive me for what I did ,,I had to know..And what I saw makes me not sorry I stood up made changes I hope you all do too ..Suit up and help ,,make changes and stop the political blame..I’ll stop there if you don’t get it Well then we’re f.....
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Lucia51 Aug 2020
Way to go!!!!! I feel everything you just said!!!! I’m a registered nurse and stopped working to be able to see my mom whenever I wanted. One and one half weeks of being in the LTCF, my mother fell “unwitnessed” and sustained a severe traumatic brain injury and stroke. She then had two additional hospital admissions totaling 3 in 6 weeks. That was more than she had had in the past 10 years. I have pictures of staff either not wearing their masks or wearing it incorrectly. I have pictures and videos of how they just park the residents, including the ones at high risk for falls, in hallways or dining areas and then staff around for 30-1 hour. No one called me to tell me my mother was consuming less than 25% of her meals and losing weight nor were there any changes or accommodations made to her diet or eating schedule. One nurse told me on the phone that they had been more than nice and accommodating to my mom but she was rude and disrespectful. My mom has dementia and if they were doing their job and being astute nurses, they would have picked up on my mom entering the terminal restlessness phase. Within days of that comment, I asked hospice to go assess my mom as I knew something was wrong. Hospice nurse arrived to see my mom extremely agitated and sleepy, checked her O2 sats which were 73%, and then looked at the tank to find it was empty. My mom had been parked in the dining area to visit with me at 4:30pm and I left at 5:45 pm. The hospice nurse got there at 7:15 pm so my mom sat by herself, in the same spot, sleeping in a wheelchair yet agitated at times for 1 1/2 hours after I left...possibly no oxygen. Currently, she’s in a hospice center waiting to pass and I get to be next to her and hold her and live on her.

How dare our government dictate to us and strip our family members of their rights by banning visitation. I have written our Governor, LT Governor, the news, the Ombudsman, but no change. Ombudsman is filing a complaint but that is all they can do because they can’t even enter LTCF. I will seek legal counsel after my mom’s passing for their neglect. I offered so many times and asked DON to allow me to come in and sit with her, care for her. I volunteered to get Covid tested and follow all PPE wearing and precautions yet the staff there were not and they now have 9 staff members with COVID and 2 residents. My advice- DO NOT leave your loved one in a LTCF, especially if they are asking to come out.
Hard2smile, is there a kind senior staff member at Mom's home you can discuss her care with? Someone with nursing & hospice experience?

The changes you mentioned - like sleeping a lot of the time & sleeping with the jaw open can be end of life signs. It is not always possible to know how much time someone has, but an experienced nurse can explain what you are seeing &.knows what signs are present.

To bring Mom home, you will the appropriate equipment, like a hospital bed. It can be done - Hospice can arrange the equipment & care staff but you would need more carer hours than is usually provided. You need to sleep, eat & rest. It takes carers in shifts to manage full care & exhausts even the most dedicated within a day. The cost of round the clock is often an issue too.

I understand your need to do something. To just wrap her up & bring her home. It's a lovely wish. My heart aches for you. I don't know if it is possible, or if there is time.

I think what I would do is find a staff member, Doctor, someone - to get a clear picture of Mom's situation right now. I would research & tentatively book a hotel room near Mom's home & pack my bags. If there is a short time expected, I would move to the hotel & be there at
Mom's side as much as I could.

It may not be your home, but it's her home.
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I'm so sorry for your distress. I guess the first question is: do you currently have the legal authority (PoA) to decide to remove her and continue to care for her at home? Other questions: Has she been assessed by a doctor for hospice? If you take her to your home what will the impact be on your daily life (realistically) and for how long? Does she have the financial assets to pay you for your care? When you ask what agencies could get involved, what do you mean? Involved in what? Her care at your home? Outside agency help means exposing her to covid more than she already is at her LTC facility. I totally understand your deep frustration and longing to give her your TLC, but your plan needs to also be founded in reality and not just emotion. Why do you think your dad and sister don't want you to remover her? Thanks for answering the many questions...
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