Has anyone gotten to the point they just wanted to bring their loved one home and take care of them?

I took my mom home (this was several years ago). She had Alzheimer's. We had tried Assisted Living, but it didn't work. She was only in 2 of them for a week each, but she was just too miserable there, so my husband and I brought her home. I even wrote a book about the trial and travails of taking care of her :"My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale."
It mentions some funny anecdotes, such as when she wanted to tell someone that she pounded the pavement, looking for a job after college, (an accounting job), but what she said was, "I walked the streets of NY, if you know what I mean." My mom might have been a sweet talker, but she wasn't a street walker. The book also highlights many of the things we dealt with, such as trying to quell her paranoia, which came along when Alzheimer's struck. In addition, she could go from being totally "with-it" and lucid 1 minute, to not being "with-it" the next. She could be hard to deal with when her cognition was "off." It wasn't easy, but we learned to deal with daily challenges. Best of luck.

Yes, my husband has had dementia for about 8 years. Unlike many different scenarios I read, he has a lot of anger that I am not able to deal with even on meds. He was at home and had a GI bleed, in hospital for 4 days then to rehab in a nursing home. I was relieved because I knew this is what he needed and what I needed. After rehab he was supposed to go into long term care! However after two weeks of rehab and because of COVID and my guilt, I brought him home! Mistake ! I am right back where I started, stressed all the time and waiting for a bed in long term. I still shudder at the thought of him being alone during COVID but when he is angry and nasty to me, I am just beside myself as to the right decision. Doctors have told me he needs to be in nursing home and my family agrees.
Its a terrible decision to have to make!

(Before COVID 19, which may change the situation.) My husband had a malignant brain tumor that was inoperable due to its location. We had hospice in a nursing home, but we decided to bring him home for the final stages. He wanted to die at home and be able to have visitors in his familiar surroundings. Hospice brought in the bed and other equipment and provided nursing care, medicine, and aides to make him comfortable. To supplement hospice help, we were able to afford full-time care (not at night except at the very end) by using money we had put aside for living expenses after we retired (he wasn't going to need them, and we didn't go deep enough into the next egg to use up what I still needed).

Glad that we did it - it was how he wanted things to end and he was much happier at home than he had been in the facility. I didn't have to spend time going back and forth to the nursing home, and we could have meals together. I could help with his care more at home than in the nursing home. He had a steady stream of visitors.

As I said at the outside, this was all before the COVID 19 lock down started, so the answer may now be different. My prayers are with all who must make these difficult decisions under current circumstances.

I have read many of the posts to your question. I have cared for my wife at home now for 7 years and she is totally disabled from a catastrophic stroke. Taking care of my wife is the most gratifying and difficult thing I have ever done. All the doctors and health care professionals said I could not do it without around the clock help. Well I do have a CNA that works 5 days a week which gives me time to shop, keep up my property and maintain a small business from home. It is a lot of work, but I know she is happy as possible and well cared for. She would not live 30 days in a nursing home and my loving wife of 29 years deserves better as long as I can provide her that. Bringing her home will take a commitment most people are not willing to make and some days you will be glad you did and some days you want. I personally think nursing homes are the among the worst things we have devised in our culture. I guess you have to ask yourself some tough questions, for me it was easy, because she would do the same for me if things were reversed. Good luck with your decision and God Bless you and your loved ones.

My husband and I took my mother in to live with us after my Father passed away, 5 years ago . Mom had severe macular degeneration and poor hearing & was being treated for cancer for 10+ years. It was not easy living with a parent after many years of marriage & raising our son. Mom & I were very close and loved each other but we argued too. She was a very strong willed lady with a mind of her own! There were times I felt very confined & trapped taking care of her increasing needs! I was the only daughter of her 3 children who was willing & wanted to help her. I had no help from other siblings. I am so glad that we took care of my Mom in her last years and I would do it again! Mom wanted to die at home & she decided when she was done with treatments & wanted Hospice to come in the home . It was worth the difficulty & hardship now that Mom has passed away 2 months ago. I miss her so much but I know she was well taken care of here with us & she was loved!! I know I will see her again in Heaven one day! That is the greatest gift I could have given to my Mom! After all she took care of me & loved me my whole life!

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 it..you 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 ..etc..so 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 etc.to 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 her..like 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 blame..so 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.....

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 falls...by 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.

I would personally recommend against it. Your mother sounds further along in the journey than mine. I originally thought, in all my anger over declines I saw due to covid and not seeing her and her being engaged, I would do home care. When we moved from WA to OR I stubbornly thought I can take care of her. She was not in a very good memory care community in Washington and covid highlighted this (I was seeing her once or twice a day pre covid).
A month with her and I and some part time help in an air bnb while waiting for our house to close helped me realize just how much she needed not just supervision and care most hours, but also other people around! I could not possibly be what she needed. so I “got over myself”, and did the right thing for her. I found the most incredible memory care community in southern Oregon and we got her in. While there was a bit of an adjustment period, she is much better cared for and they are still doing lots of things with the residents. It’s not a large facility, so some group stuff and one on one time. Plus she has someone there not sleep deprived when she gets up her unfortunately many times at night for bathroom. She has care and companionship which is what she needed.. I do get to visit either thru the gates to the courtyard, or scheduled socially distanced inside the courtyard. It was the right thing to do for her. The truth was, our home is not her home (even when staying with me, she continued to ask if I was taking her home... to her home in Indiana). And caregivers coming in to help were not as well trained as in her current memory care home. She enjoys the love and attention she is getting, and they enjoy her. everyone’s situation is different however, so best of luck to you I whatever you decide.

I am also in the process of bringing my mom home, currently in memory care unit, isolated and declining. What has helped me to make the decision is quality of life. She responds best to family care, touch, love and contact. She has declined rapidly with out it. Luckily I will be able to hire homecare to help a lot!. BUT, we had a meeting with the director of the facility to discuss options if it doesn't work and they have agreed to allow her to return at the same price she is currently paying and they are willing to waive the "fees' if returning. I suggest you try and have a meeting also to discuss options if she needs to return. Also, I know hiring people to come inot my home is not ideal and there are concerns about exposing EVERYONE (mom,myself and 15y.o daughter) but I honestly feel like she is at the same risk while in memory care unit , there is a lot of turn over and staff coming in and out and I think the Homecare staff/ agencies that we contract with will take the same precautions, I also cannot just sit by and watch my mom deteriorate when I know she will be better cared for and LOVED at home. There is no substitute for that! Good luck in your journey, it is difficult and I know I am not fully aware of the challenges, but I know there are resources out there that will help. For example my daughter has been able to talk with hospice social worker about the impact and change this will have on her, I am worried obviously about that, but there are resources available to help manage. YOu need to research and get creative but there are some out there. I know it will still be difficult and challenging but I know this is the best for my mom.

We did. Have a frank talk with her doctor. My mother’s dementia had progressed from mild to severe in 6 weeks. If she’s dehydrated she could have a UTI. My mother did , was hospitalized then rehab and her dr told me she probably would not improve. I did not want her to die alone since that was one of her greatest fears. We took her to my daughters house with hospice. She lived a week. FYI it was roughly$4000 for the weeks worth of 24/7 aide care . Hospice was free but they only have aides for a couple hours a week. You need to be aware of what you are taking on though . IF she improves some facilities will not take them back. Are you really financially and physically capable of 24/7 care for months?
My mother was an exceedingly proud woman. At the end she was unable to care for her hygiene, move, sit, and had very little coherent thinking. She would have HATED being like that so imo her passing was a blessing.

Check into Pace program is it in your area or home care depending on insurance etc.

Please do not bring her home. Some of what you are describing is the aging process. I know it breaks your heart but your Mom needs to be in a place that is equipped to handle her care. They may have her on siezer medication to help with another issue Are you her POA? If so speak with the home about your concerns, if not speak to the POA. If Mom is in a home then that's the level of care she needs and should be left there. If you have concerns for her safety etc talk to the Obudsman for the facility. Your Aging/Senior Services center can give you the contact info.

FTD is the most difficult of the dementias to manage and it does get to the point where the patient cannot manage as is the case of your mother in law. Your heart is very big... and Mother in law is at end stage. My husband is advancing to that stage rapidly, but is at the personality deterioration part of the disease. I find myself flip flopping of praying this will end then fearing it will. No easy solution to a difficult situation. You have my empathy and I appreciate your kind heart and sensitivity to your mother in law.

Yes, I am going through this now with my father. He is 79 years old and fell off of a ladder. He fractured his pelvis and is suffering from head trauma. He was in the hospital for 3 months in long term health care. He developed a blood clot in his leg which led to dry gangrene and has now had a partial foot amputation. They wanted him in skilled nursing. We could not see him or be with him at all. He lost a lot of weight, stopped eating, dressing, drinking, talking and walking. We also found out he was being drugged with seizure medication and psychotic drugs for dementia. He kept getting worse. We discharged him and brought him home. It was the best decision we ever made. We have nurses from Interium Health and a PT and a OT, and a speech therapist. He continues to get better everyday. He is talking and eating and has hope now. We took him off all the drugs and he is making sense now when he talks to us. We are getting the CNA help from Blue Dot Cares. My father is getting the best home health care ever. He continues to thrive because he is at home where he is loved and cared for and not abused with drugs because places do not have time to care for him. Please do this for your mom. It will be the best decision you ever made in your life. You can give her a better quality of life that she deserves. There is always hope and God will give you the strength to do this. With God all things are possible.

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.

We brought my Mother in Law home with us a couple of years ago and through the tough times and all, we don't regret it at all. J has frontal brain issues too and has continually declined since she moved in with us but would have at the facility too but here she us surrounded by love and companionship. We are very grateful that she wasn't in a facility when all the pandemic hit. We have been able to keep her pretty well isolated from it.
We've had our ups and downs and neither of us have had any experiences in elderly care but have managed to learn along the way. It's hard work for 2 ppl, so I can't imagine how 1 person alone could manage it. J is still communicative and can feed herself. J has just recently lost the ability to stand, so requires us picking her up to set her on the toilet, while the other pulls her pants down, cleans her up and redress her. I am checking into adult diapers today so I alone can change her as needed not just when there's someone who can lift her. We don't mind our lives on hold because she's worth all the hard work. We tried sitters but they are usually older women who are not able to do the physical work with her., but the may just be in our area.
I would say it's worth the hard work but not sure i would try it alone.

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. ❤️

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.

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!

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.

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...

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.

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.

Hey Hard2smile. I can really relate to your thread. I have a very similar situation. My LO is in pretty much the same physical condition as your mother. My cousin is on hospice and mostly bedbound. I can't visit. They are supposed to start a visit through a window plan, but, not sure when.

What I know is that it will require around the clock care. I have to ensure that I have that. I can't rely on people telling me they will try to help me. I need confirmed times, from people who don't have a job and can actually do it, without bringing covid in to either of us. She would live with me, but, I need a lot of support. The county and state only can provide so much in my state. Hospice can provide some help, but, that's a couple of times a week. Her resources aren't great either. They would not cover around the clock outside help to come in. Plus, I'm pretty funny about strangers coming in. You don't know where they've been and A LOT of people do not use safety precautions for covid. I've noticed that recently at doctor offices. It's crazy.

So, please post what you find out and what you decide. I'll do the same. I just hope my LO is okay until I can get her from the MC. I know they provide good care for her, but, now with it so isolated and her dying.....I just want to make it better for her.