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She's 56, I'm 28 and she started showing signs frontal temporal dementia at 47 and was diagnosed at 52. She's been living with me since three days after I turned 23. She's needed full time care with everything for the last year and half. On the 2nd she broke her arm and didn't react to it at all. Only reason I knew something was wrong was because it swelled up and took her to the ER.
Long story short, I had a breakdown in the ER and I was terrified to touch her again. She's mostly mobile, but likes to get down on the floor and stroke the carpet. I think when I was helping her up to go to the bathroom, that's when the break happened. So, the hospital has been helping me the past week and half getting her into a nursing home, and after the long term Medicaid paper work goes in today, she should be going to the Nursing Home Elms Haven in Colorado.
I know I can't care for her anymore my career has suffered and I'm making way less than I used to. Her disability was paying rent, and I'm currently in the cheapest apt of my area. I'm worried about how I'm going to do it, but I'm more worried about her.
She doesn't seem fazed by anything that is happening, and I'm sure she'll be fine and her typical happy self that she's been at the hospital, but the place she's going to doesn't have good reviews, main problem is being understaffed. She's mostly nonverbal, it honestly depends on the day on how much she does or doesn't talk.
I plan to visit often several times a week at random times and days, but I'm so scared of sending her there. Any advice on how I can make sure she's being taken care of when I can't be there for every day, all the time? It's really hard for me to give over control of her care.

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I’m truly sorry you’re dealing with this, especially at your young age. My mother spent four years in a nursing home. First thing, please get over worrying about being there all the time, that’s impossible for anyone, and even if we could, it doesn’t prevent things from happening. Things happen even in the home with family right there. Next, don’t obsess about ratings so much. They can be influenced by a few bad ones, be outdated, or any number of factors. The best indicators are what you actually see and experience. Be nice to the staff when you go, get to know them, show them that your mom is a resident that is cared for. It’s a fact of human nature that when they see that you care, they will care. Once in a while take the staff that works with your mom some cookies or doughnuts or some other simple treat, they aren’t well paid and will remember and appreciate your kindness. You are right to show up at varying times. If you encounter an issue with your mom's care handle it directly but without blowing up, take it to the next level only if/when you don’t get results. Your mom is blessed to have you in her corner. Remember to build a life for yourself, moms want that for their daughters
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Cleofox Feb 2020
Thank you! I do plan to give them thank you cards, and get treats when I can afford it for the staff.
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Please do not worry. My mother bitterly proclaimed she would never, ever go to a nursing home

one night she tripped on the hall carpet on the way to the bathroom. She was alone and over 100 years old. She broke her femur and was brought to a hospital to care for the broken leg. After about four weeks, she was admitted into a skilled care facility.

long story short. She was permanently admitted. She is as happy as can be. She is SAFE, she has care, no worries, and she has social companionship. Family visits and makes sure her room is comfortable, with pictures and her personal things. Her family can offer her love and any assistance, but they do not have the crushing burden of taking care of her 24/7.
she is now 103 and in the best place that she could be.
it was the best choice for all of us.
best wishes
Bernadette
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magnumpi29 Feb 2020
Its unfortuanate that something couldnt have been done with the carpet to prevent falling
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It will take a good bit of time for you to stop having that knee-jerk response that you need to take care of her every need at all times, but it will happen. Because as Daughterof1930 said, you can't be there all the time. You sure sound like you are on top of this already--visiting at different times, etc.

I'm so sorry you're going through this so young, and that you mom is, too. Get her settled, catch your breath, and then plan something nice for yourself. You need to take care of yourself.
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Cleofox Feb 2020
Thank you! I still get the knee jerk reaction when I hear the neighbor bang something around and I think she's gotten up and fallen in her room.
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Your question caught my eye because I am visiting an AL facility today for my 94 year old father and am nervous too. It’s always a wake up for me when I see what others are dealing with the care of another. I am older than your mother, and I can not imagine having my children take the responsibility that you show. While you might be nervous, please be proud and comforted that you have gone as far (farther than most) along the path with your mother. Neither you or your mother chose the path, but you sacrificed to stay by her side. That is no longer possible. Monitor the facility, give them feedback, both positive and negative. But realize that it is impossible to ever be 100% happy - the situation is on a downhill slide and there is only one outcome. As a mother, I would not want my child to dedicate their young life to my every need. Stand proud that you were able to go so far with her, but continue to move forward with your own life. Life can be so unfair - I wish that I could give you a hug - your love and sweetness shown through your question - 😘😘.
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You were caught between a rock and a hard place. You did not have any other choice.

Of course, you are nervous. Transitional times are tough. After the dust settles and she finds a routine it will be easier to adjust.

You are wise to go as often as you can to visit and be mom’s advocate. She can’t stay with you. You deserve a life of your own. The main thing is that you arranged for her to be cared for. You are a good daughter to care so deeply.
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Hang in there girlfriend. You're so young to go thru this but you have strength and love. Remember that please. I know you must be so overwhelemed but please come back and let us know how your MOM is doing. A big hug for you!!!
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My husband went to a nursing home at the end of September after a hospital stay. He is calm and content. I do go every day, but that’s because I want to see him, not because I’m worried. If your mom likes to feel textures you might want to get her a soft baby block or stuffed animals (nothing she can pull off) for her to hold. My husband enjoys this. He does spend a lot of the day sleeping, (they are not giving him anything but his regular meds - a bloodThinner, an anti depressant and anti seizure) but he is in late stage with hospice care. He still gets agitated during grooming, but that’s par for the course as he doesn’t know what’s happening. Other than that, he is always calm and content when I arrive, this was always the case at memory care. Best wishes.
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You have done your best and have been very responsible, at a young age. But she needs more help than you can give her alone. Your plan to visit at different times is a good one. My mother also has dementia. But hers is a slow decline. I had to get used to the decline, and now understand that this is natural, although it is sad to see and accept. When she first went to assisted living her mental ability seemed to decline more rapidly, and the other people there also seemed listless. Several months ago she started falling when she tried to get up to go to the bathroom at night. She no longer walks, and can't feed herself now. We got her a medical bed with bars on the sides, and the aides put her in a wheelchair to take her to the dining room. They feed her. As long as the aides are doing their best to keep our loved ones clean, fed and safe, it's a help. People come to give art therapy, pet therapy, play music and entertain them, although my mother is no longer responsive. My mother now has hospice-type care. I was speaking with a hospice case manager who stops by to see her, and she said at a point people also lose their appetites. It's natural. Speak to a social worker to find out what other services are offered - if you can get advice and maybe even some grief counseling, it might be helpful. With dementia, our grieving is during the decline as well. Take care of yourself. You are young, and you have been very responsible. Try to make a good life for yourself. Your mother would want that for you.
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Your choice of a facility is limited if you are relying in Medicaid to pay. When to visit look for things that tell you your mother is being kept clean and safe. If there are signs of neglect or abuse, dart looking for a better facility or use the same money for adult day care while to a a work.
Your mother at home even if some days are spent at Adult Day Care would still place a lot of responsibility on you. Not ideal. You are very young to be having o deal with this! Most of us who are caregivers are older than your mother! At 28 I don't think I would have had the heart of composure to do as much as you have done.
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Bless you sweetheart. The nursing home will have an Ombudsmen and should have the info listed in a public location. If not, ask for the name and number. This person will act as a liaison between the resident and the nursing home if you ever have a problem. I, too, had to place my mom in a nursing home this week, we are struggling to find our way through all the red tape involving Medicaid.
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