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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 don't blame you for wanting to bring her home. However, consider this: does she, in fact, even know where she is, and does she actually remember you? I wasn't going to put my dad into a home. I changed my mind once the care became too much for me to handle alone. I decided that, since dad didn't remember me, didn't remember that he even has a daughter, and since he no longer recognised our home of 50 years, he'd be better off in a secure facility that was set up for his needs, with fresh staff coming on each shift. I'd become a tired, crabby stranger to him, a jailer trying to keep him in a strange "hotel. " (That's what he thought our house was. ) You might be comfortable with home care. I wasn't. We're very private people, not used to strangers, or even very many familiar guests coming to our house. Another consideration on my part was the fact this old place is slam full of keepsakes; no way I could put away all the things I wouldn't want strangers to handle, break, or possibly steal. So those were my considerations in keeping dad home until his dementia was severe. The real deal breakers for me were his constant escape attempts, and his constant night time falling. Those things may not be an issue with your mom, if she no longer walks. But she might possibly need 24/7 help for other reasons. So, yes, just be sure of what you're getting into, especially as she gets worse.
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I'm going to skip over the emotional aspects and get to the facts. Do you have the legal authority to bring her home? If you do bring her home, it will be a 24/7 job. Who will watch her while you run errands, attend church, have an afternoon away, etc.? Do you have a vehicle that you can get her in/out of for Dr. appointments? It can get pricey to hire a transport company. If you decide you can't do it alone, be prepared to spend $7,000 plus a month for 24/7 care or $15-20 per hour.
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Your motivation is noble

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?
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Hi! My husband was diagnosed with frontal dementia. Doctors said "find him a good home." He had been hospitalized 3 different times in the last 3 years. As a young man he was diagnosed bipolar depression. Doctors were saying he was paranoid and other doctors said they never heard of a bipolar person becoming paranoid. Bottom line, he has kidney disease and needs to be hydrated...hospitals would not even make sure he had water available and I really became very determined and angry that he wasn't getting the care he deserved and needed. He went to an assisted living program that was designed for seniors with mental health issues and was there from just before Christmas until early May. He showed improvement and I am working every day to keep him hydrated, get his medicine and generally look after him. When he came back home from the assisted living he began going to a day program, which of course isn't available now due to covid. It sounds to me that your Mom would need in home care. I'd suggest you get in touch with the elder services government agency in your area: It's the best thing I could have done...young ladies came right to our home and laid out all sorts of possiblities/services available. You'll need help. I wish you well. I'm glad that I brought my husband home and would caution you to get the resources you need so you'll be able to take are of BOTH of you. All the Best!
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Yes, and I did bring my mother home. I made sure all the legal issues were in place, then I took her out of her assisted living facility (a lockdown alzheimer's unit) for lunch, and never took her back. Not a damn thing the ALF or other family members could do about it.

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!
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If you are willing to be with your mom a lot, And hire an in-home caregiver for when you need a break, then Yes!! Give a go and bring her home.There are plenty of YouTube videos to help give you a crash course in ‘resident assisting ( transfers, feeding, Redirecting.....) . Just think it thru.... she may not get admitted into a facility as easily as the first go round if Things happen to become overwhelming.
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There is no one-size-fits answer here.
IF (and that is a big IF) you have good, dependable help, then yes, bring the loved one home.
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I also considered this idea due to Covid restrictions but Family and friends reminded me of everything mom needs help with and the cost to hire it done..$6000 -8000 min a month...And I remembered all the progress she has made with loving care...walking again, gained her lost weight back, eats meals with others, has daily activities, they make sure she changes her urine pads, they take her on three long walks daily, she goes outside daily, they remind her to brush her teeth, they give her meds 3x daily, and they help her shower! The doctor comes there...no tiresome car trips to her doctor visits..Lab work is done there..no tiresome trips to the lab...WOW.. how would I do all that and take care of my 70 yr old body??? And be nice ALL THE TIME!! Rethink taking her home especially if she is immobile..she needs turning every 2 hrs all day , all night .....to avoid bed sores!!
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Jimmejam Aug 2020
Are you sure the nursing home will turn your mother every 2 hours?
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I sprung my 100 year old grandfather out of "rehab" in 2003 after he fell and broke his leg. He had spent 100 days there and had his health destroyed by several bedsores, lack of movement and poor food choices offered that caused digestive upsets. He had no dementia. I had moved my grandmother to my house while he was in "rehab". I should have brought him here after he was stable if the rod was inserted in his femur. I had no medical training at the time and was running a full family child care out of my home, with one child in college. I had consulted the local visiting nurse association. They organized everything and arrived within an hour of my grandfather....He qualified for a a lot of care paid for by medicare. I was trained on how to move him in and out of the bed. His health improved and his wounds healed. We had him walking and using the bathroom in short order. The eight months at my house were very busy but so much better for everyone. I had never lived within 3 hours of my grandparents. My grandmother was at my home for another 2 years- also no dementia but combative much of the time...I hired local caregivers as needed to help. ..Hospice stepped in at the correct time for both, they both died quietly in my home...... I demonstrated to my kids how I want to be helped at the end. I WILL live close to my kids when I downsize, when and where to be determined. I feel my grand parents and now my folks were/are a bit selfish, expecting me to travel 3 hours to manage/help them..... My mother is getting more help than she offered her parents. Food is delivered and the lawn mowed. She refuses to move near me, either in a place she choices or in a first floor living rental house that I own near me. She is wiffy. Life goes on.....
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Teddiegough Aug 2020
Hats off to you!
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We tried several facilities, even 5 star ones, and they were all horrible, terrible places. I would never encourage but strongly advise to NEVER put a loved one in a home or any facility.
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.
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LoveLea Aug 2020
It was inspirational to read your post. I am also doing it alone and it is a 24/7 commitment. I’m so tired and drained. But what I desire most for my mom is for her to have peace. With dementia, her mind is everywhere and seldom at rest. Her body is drained from trying to cope with past memories of caring for her 10 babies. This is indeed one of the hardest things to watch.
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You mentioned "she is hurting so much, it is just not right". In what way is she hurting? How do you know? Sometimes, we have a tendency to put our emotions on other people. I know I have at times. If she is sleeping a lot, she is at peace. She doesn't know where she is when she is asleep.

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))
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Teddiegough Aug 2020
The people who are spreading the virus in long term care facilities are the underpaid employees---not the family members. Most of these employees have to work in multiple facilities, because the facilities pay so little and, many times, do not hire full time because they do not want to pay benefits.

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!
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My heart and my prayers go out to you. Have you considered a hospice care team? It may be very hard to decide that your mother is near the end of her life and I don't know if there is good hospice teams where you live. If your mother is bed bound, then all care will happen in her bed. A hospital type bed and an air mattress facilities this and helps with frequent repositioning that is necessary. Can you get an accurate understanding of just what she will need at home, who and how will this realistically be provided? What best meets her needs? If these can be met, bringing her home may be the best choice. With my own mother, I regret I did not have hospice involved earlier at the end of her life. Can you shift your focus ( if you have not already done so) to easing the end of her life? It sounds like you love your mother very much and do not want to see her suffer and do not want have her alone at end of life.
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.
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Yes it has been hell but as much fighting as ive had to do with siblings and struggle financialy and all the times i didnt want to get up to clean and bath and change her i wouldnt change a thing even if it took my career to stay home and see her smile even once everyday moms are remarkable mine worked her whole life To take care of her family when my dad died the banks took her home of 36 yrs and she never missed a payment shes gone through so much and is now paralyzed after a fall and stroke Its the hardest thing but each day matters your mom may have dementia but she still can sense you are there i suggest you look for a decent agency that is tailored to her needs but i applaud and respect healthcare givers and workers for the patience caring and compassion and understanding given to us I guess ive said enough but last thing be prepared to give up your life because it will take up every minute of your days and nights it can drain you emotionaly and physicaly taking care of another human being can be taxing and challenging to find the needed resources if your not financialy stable but in the end when its all said and done you wont have any regrets and she will know she was loved and not forgotten
Brent Dunning
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Teddiegough Aug 2020
Yes to everything you said.

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.
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HI...

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....
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bowgirl Aug 2020
Your story sounds like some the visiting nurses reported to me. They were so frustrated in some home care situations.... Thank you for dedicating your life to caring for people.
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No.
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.
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DonnaF777 Aug 2020
Hey.... when in comes to dementia in particular...it is impossible for one person to take care of them--- to do all the caregiving. Impossible. They are a handfull. I would not want to take care of my mother if she were alive and had dementia. Would I do it ? I doubt it. She hated me and she let me know it. She would call me stupid so, me taking care of her, she would not even like that! I would get on her nerves, most likely. Dementia patients are very difficult to take care of. Demenia patients are not all alike either. Some are easier than others... and some are downright violent and mean. Please.. do NOT bring your mom home especially if you are the only one going to be a caregiver.
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I read all the postings in reply to your question. I mightily agree with all the caregivers that brought their loved one home. My dear friend is in my home for almost a year now. Hospice comes, and they are wonderful. I learned so much of what to do (and not do) when he was in hospital/nursing home. I have to say I've become quite expert with Foley catheters, changing a bed with a patient in it, diaper changing, shaving, haircuts...you get the picture.

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.
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my husband had frontal lobe demantia too . He was in a assisted living home for 1 month. I brought him home. His roommate bite him. He kept falling and they didn’t care, briuising all over his face. I took care him for 5 months. I was exhausted. Ask for help from friends and your community. Hospice was will him, he died May 9 .he love his home and that’s were he died. I know I did the right thing bring him home. Good luck with your mom.
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Imho, you should NOT bring your mother home since Frontotemporal dementia is a horrible disease to manage by yourself. She needs a trained medical professional, irregardless of the Novel Coronavirus being a factor or not.
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Two years ago I placed my wife in a memory care facility. The children strongly suggested that I place her in a memory care facility as she has Alzheimer's/Mixed vascular dementia. After two nights the memory care facility kicked her out. At that time I made up my mind that I would never, never place her in another memory care facility. We have a caregiver firm that comes in 9 hours a day 7 days a week. It is expensive but no more than a memory care facility and she gets excellent care. I have the ability to come and go as needed which gives me freedom to do personal things and not worry about her care. I suggest you look at home health care.
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I thought about brining my sister home and was on the verge of bringing my sister home-many symptoms you describe. I was desperate to get sis out of the awful place she was in-neglected, injuries, lost 30 pounds. staff did not care at all about anything ever. I was planning on doing until we got a call at a place we had wanted just in the beginning weeks of covid. she could go with out being quarantined but i could not give hugs once she moved in. Visits are sad she cries and wants to be with me. We have not had covid her community had a few residents and a few staff with covid. I got a call on friday to have a conference call about her behavior I am really scared they are going to tell me to come get her. I am only one person with a family, plus both 95 year old parents who insist on living in their own home in spite of care givers -dad went to er today and now in the hospital. I can not do the work of 5-6 people for bathing, dressing, bathroom, diaper changes, she has trouble walking even with a walker, my house has steps all over that would need to be secure, i am afraid she would get up in the night get confused by my family members she does not know anymore, I want to do the right thing by my sister, i have not had good experiences with home care agencies like what my parents have has been a real mixed bag of "help" we would need a hospital bed and equipment to get her safely into the shower.
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I vote contact Hospice or have your moms personal physician do it if she has one. They will provide a hospital bed, Disposable chuks, diapers etc. Bring her home and enjoy what time you have left with her. If you do, feel free to contact me. I give you some tips on making diaper changes easy. Hospice will send someone in to bath her. Ask for mornings and 3 times a week. Three days a week Hospice baths my mom at 8:45am and changes her. They change the bed once a week too, but will do it more. Then they send me a text they are done. This gives me time to take care of a few things on those mornings.
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It is inspiring to read so many wonderful stories. My sweet daddy just passed in June after about 8 months of declining health. His was due to many cardiac issues and brought on dementia and renal failure due to bad circulation. For 1 month he went to rehab after a hospital stay. He was miserable and begged not to go back there. We took him home to his apartment in a senior community and started home health care, PT, OT and speech. My sister and I found aides to help each day. He had two more hospitalizations, during the last one it was time to take him home. Hospice started care and his last weeks of life were very hard but he knew he was home and he was happy. He was with his wife of 65 years, family and friends. The pain was managed well. He passed at home. I am thankful and have peace knowing he was well cared for. I am sorry he ever went to rehab.
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Yes, I have considered it and decided against it. Mom was hospitalized with pneumonia the week Covid shut everything down, then to rehab and now nursing care because of mental decline.

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?
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KaleyBug Aug 2020
I care for my mom on hospice she lived across the street. I am not living in isolation. I use the precautions necessary to keep mom and dad safe. The same as the Hospice Aide and Nurse do. My mom is down to her last weeks possibly days. Like the original poster mom is now bed ridden. Her mom sounds close to the end. I say bring her home.
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My mom was in 3 NH's for rehab. The first one ignored a UTI and she developed a stage 4 tailbone wound there that they did not tell me about. She was rushed to the hospital with delirium from the UTI I kept telling them to test for. I was shocked when the hospital intake nurse asked me about the wound the NH never told me about....I was POA and only child. The second NH an aide dropped my mom in front of her wheelchair and broke mom's ankle. The 3rd NH was better but when mom plateaued out and they suggested hospice, I had had enough of dealing with NH's and took mom home on hospice. It was a hard 8 months, but the hospice staff was great and mom was happier in her quiet bedroom in my house. I played music she loved and had fresh cut flowers in her room, photos of her family. She died peacefully there and I don't regret taking her out of calamitous, noisy, and dangerous to her health nursing homes.
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KaleyBug Aug 2020
Bless you. You sound like me
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I’m so sorry. This situation is horrible for so many. My husband also has FTD and is in a local AL and I’m at least able to visit him in person every day, outside and wearing a mask. Are you able to FaceTime your mom?
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Hard2smile
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.
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Husband has late stage Alzheimer it’s been 8 years often thought about putting him in nursing home and decided against it. At first he was going to adult day care and I was working. I got him Medicaid and now have 40 hours a week of aids to help me. I have no family to help and very few friends to help but I would not change my decision. Before Covid hospice and Medicaid gave me 20 days a year for respite I went on cruises visited New York and came back relaxed
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
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My father in law passed away two days ago and had vascular dementia (similar type to your mum). Your description could easily have been my father in law. My heart goes out to you, it is a terrible disease, and with COVID, it’s an especially terrible time to be in care.

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 💗💗
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I know that you love your mother and it is great that you want to take care of her. Reading your 2nd paragraph, would you be prepared or would you be able to have additional help in taking care of all her daily living needs? It is one thing if you were already taking care of her and adjusted to her increasing needs with deteriorating medical conditions, but to takeover her care from a facility without prior experience maybe a hardship that you might not be able to manage; especially alone.
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My dad’s 90, has Alzheimer’s and was in MC for over a year. He’s wheelchair-bound and can still talk. He was giving up and starting to refuse meals and sleep most of the day. I brought him to a handicap accessible apt and hired full time help. He’s so much happier now. We use Home Instead and they’ve sent excellent caregivers. My friend brought her husband home too. He was 97 and needed help with most everything. He passed last week, but was home for two months with hospice care. He was so pleased and my friend was with him till the end. We’re both glad we took our LO out.
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