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?
Many people do not realize what they are getting into, when they make this choice.
First of all, your Loved One may require a level of medical management that cannot occur in the home setting.
This is not limited to medication management.
Your LO might be susceptible to injuries sustained from a fall, while in your care.
Are you willing to pay the price, for taking on this responsibility?
Your responsibility to your spouse, to your kids and to yourself must come first.
It is possible that your elderly LO might be more comfortable, with you.
It is also possible that you will sacrifice much in the process.
Will you be able to be the loving child, then?
I did this right before all the corona virus rules went into place, and I am glad I took her out because she would be dead now, and would have suffered a very lonely and depressing death----locked into a 12 x 14 room day after day, month after month, without any visitors allowed--and minimal care from people who were spreading the virus (the ALF employees) as they worked at multiple facilities and took the virus from facility to facility and from room to room.
I now have my mother in my home, and have a personal care giver come in 8 hours per day. She is still deteriorating, but at a much slower rate and is significantly more alert, aware of here surroundings and HAPPIER.
I would have felt horrible and guilty for the rest of my life if I would have left my mother is that DEATH PRISON!
IF (and that is a big IF) you have good, dependable help, then yes, bring the loved one home.
I decided to take care of my mother myself. Jesus said "that there is no greater gift then to give ones life for someone". Well, there is no one that deserves this gift more than your mother or father. I will tell you that it is very very hard, physically, emotionally and spiritually. I am tested all the time. I do fail a lot but I keep on trying and doing my best. I have done this so far for at least 6 to 8 years now with no real help and no time off. I have 5 other brothers and sisters and no one will help except for one brother, who himself is in much need of a caregiver and even when he helps, it is twice as hard and twice as much work for me. But my faith carries me through. Without that I don't know what I would have done. All I can say is that you have to give up your whole life, everything, and it is the hardest job I have ever had, and it is a job, 24/7. Not much sleep, physically in pain most of the time and exhausted all the time. But I would never have it any different. The time that I am spending with my mother is priceless, and I feel sorry for my siblings who are too selfish and will never get this time back to be with her. Accepting this position is not for the strong but for the loving souls who choose this way of life. I hope I helped in some small way.
This is an extremely hard time for you. I know it seems like it is not right, but this is what it is. They can't make exceptions. If they let you in, they would have to let other people in to see their loved ones. That is where the danger is.
I think you have some good advice from other members of this forum. Plan with your head not your heart. Can you REALLY give her the kind of 24/7 care she is getting there. If you bring her home and then can't do it, there is a good chance she can't go back, then what? Perhaps you could ask the nursing staff what they do and then realistically see if you are up to it. Remember, they have 3 shifts of people to help her. You live alone, who will help you and can you support yourself for months or years?
((Hugs))
It is disgraceful and the state agencies, who so diligently and loudly shout out that they are there for the benefit of the elderly, do nothing---because one of the biggest state lobbying groups is the "the elder care" associations. Check it out!
Perhaps then if you have the resources in time, money and ability, you could bring her home and ease her last months. May you find peace in your decision whichever it is. Also, it may be possible to try at home and if it doesn't work, go back to a nursing home.
Brent Dunning
I would like to add that the US medicare hospice program is a godsend! This program has helped so much and I really appreciate the caring and knowledgeable nurse who comes out every week, the 24/7 phone line where I can reach someone with questions, the "bath assistance" person who comes out 2x per week.
I would also like to add that the US elder legal system is an atrocity and a disgrace to the US. It is nothing but a system, set up by lawyers, who benefit by trillions of dollars at the expense of the elderly. It is nothing but a system, set up by "elder-care" attorneys to eviscerate the trillions of dollars of assets in senior citizens estates. And, it all happens when the elder are at the most vulnerable time of their lives. And, it contributes tearing and destroying families.
I have never had to take care of my own family with anything like this but.... I have worked in home healthcare for 25+ years taking care of people, mostly in their homes.. some in facilities.
I now take care of a patient and this is sometimes what happens. They brought dad home because they stated the facility was NOT taking care of him properly. He has pressure sores....two of them to the point of very open wounds. He is totally bedbound. When they brought him home, they were keeping him on his back. They seem to not know what caused these wounds on his buttocks? When someone is bedbound, they need to be turned at least every 2 hours and kept ONLY on their sides when they have pressure sores on their back/buttocks like this man has. He does NOT turn himself. He has to have someone do everything for him.... we feed him, make sure he gets offered liquids at least every 2 hours. He is bathed, shaved and lotioned by hospice aide. I give him his medications. He wears pull ups and when I come on my shift which starts at 7:30 am. he is always soaked with urine. Appears no one changes him before I get there in the morning. Maybe they don't change him all night long? Who knows !!! The family is also not keeping track if he is having bowel movements. Went without having one for 3 days when he was having them every day. I, as his home health aide, called his hospice nurse about this. It should have been the family taking care of this. I don't think most families are like this. The house is dirty... He also has dementia. There is no way one person can take care of this type of patient. NO way. They are a LOT to handle. Dad has the money to pay for his care. Many families do NOT have the funds required for this much care. There is a LOT to keep up with. And.. once you bring her home, it is hard to take her back if that is what you will have to do....
And I want to be as honest as possible.
Your response is a lovely and caring tribute. My mom is 95, alzheimers, and on hospice care in a nice place.
You were especially lovely in talking about family. I once had family, a dad I adored, and a brother I loved. My six foot, 200 pound dad fell on concrete in the garage. Over hours the next day, he became unable to keep his balance, his legs stopped working, he could not walk, could not talk, and no longer make sense. My mom, who was there with him the entire time, did nothing to get him help. She said my dad told her not to. I guess she was scared. My brother found out, got help for my dad. My dad died with in a few months with a closed head injury.
Several years later, my brother went into his room, laid down, and began slipping into a diabetic come. My mom went in to him several times, and would shake him to wake up, but never got him help. My brother may have already been dead. I guess she was scared. He died last May.
So, when I talk about family, it would be me bringing my mom home to my house and doing everything for her. I cannot bring myself to contemplate changing her diapers, or helping her up or down, or watching tv together. Sorry - can't do it. I also have to consider that if I fell or had a seizure or cut myself badly, pattern tells me that I would die. Want to try and avoid that.
Perhaps you have guessed that my mom and I have never been close. That would be true. So I did the best I could. I put her in a place where nice people take good care of her. I facetime with her once a week, if she is able, and that is what I can do. I have no more to give. The idea of bringing her home to my house fills me with horror, and I live alone! I could do it, I just don't want to.
Some of you have shared really lovely tributes to your loved ones and I read them with awe. If taking a failing person into your home for their final time left is what you want to do, I think that is terrific. But some of us have our reasons, and we simply cannot, and will not do same.
Like I said, being as honest as possible.
At first I was frantic trying to do everything perfectly and that didn't create a good quality of life - so much stress. Over the months, I calmed down and realized it was the love, the personal contact that are the most important things.
My friend has dementia and is at the point where much of what he says makes no sense, and then suddenly he has flashes of lucidity. It feels wonderful.
What I learned, and am learning, about myself is such a gift.
Those days when Michael feels he's dying, I hold him and help him find peace... Perhaps holding a newborn compares. It's good.
It has been so much work. I will miss him very much when he is gone.
Good luck to you.
Contact me if you need to talk.
She is well looked after there and the nurses and doctors have caught several issues that I would never have known about. They keep a constant check on temperatures, rashes, injuries, etc. She sees a dr every week who follows up with me when necessary.
My brother and I have been visiting several times a week for window checks, sometimes she is awake and we can talk on the phone. We have no doubt the staff is taking good care of her, many eyes catch problems. Much better than I know I could!
Even with the extra precautions and work due to Covid the staff works shorter shifts than the 24/7 in-home care requires. Are you prepared for the isolation that you will have to live with to keep your LO safe?
i am sorry to hear of your heartache. As I just lost my mother I’d like to say that with all the hard times I am grateful I had her at home with me. I am glad I made that decision and am sorry I didn’t do even more for her.
I have been on seizure medicine and it locked my brain. I was like a dead woman not able to function. Bless your mom’s heart and what she is going through. Please, take care and may you have wisdom in the days ahead.
I have become a self taught nurse he has a feeding tube which I manage he has to have breathing treatment twice a day and I change his adult diapers when aid is not here. You can do this with help from hospice and Medicaid long term care. Don’t go out as much since Covid but still get out when aids are here
if he was in a home I could not sleep
Just pray and ask God for guidance and he will answer, that is what I did and he gave me the answer and strength
I am happy with my decision
Best of luck
My FIL passed away in the early hours of the morning, having been visited by his two children up until 8pm the night before. The restrictions meant that no other visitors could visit, not even me and my BIL.
being in hospital was best for him. He had pain medication dispensed as required and nursing staff to provide care in those last two weeks.
For our loved one being in care was the best place, however each family is different and I do hope whichever path you go, that everything works out for the best 💗💗