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?
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.
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 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.
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.
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.
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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