Mother going to Nursing Home today, I'm so anxious.

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Mother going to Nursing Home today, I'm so anxious.

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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.

Assisted Living Early Onset Alzheimer's Frontotemporal

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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 They can be influenced by a few bad ones, be outdated, or any number of factors.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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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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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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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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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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Everyone that knows me on here knows i am not a fan of Nursing homes but sometimes, as a last resort, may be necessary. Nursing homes have a bad reputation for a reason. There are other options sometimes to NH placement if you are willing to learn about them. Most people dont even know they exsist.
When my mom was bad like your mom I used Adult day centers, that way you can still work and they are getting taken care of in the daytime, they are usually open from 7a-6pm and are equipped to handle people with dementia. They even have a nurse on staff and they administer meds. The staff can escort them to the restroom to prevent falling. Also, depending on her income the State paid for our day center, they even gave her a bath three times a week!.
They played kid like games with the ones that were able, they brought in singers, therapy dogs, etc. It was great, it was free to her as teh state paid and they got to come home at night!
If your worried about your carreer may be a solution at least it was for me as that is one of teh main reasons people use them, it enables you to have a normal M-F job and not have to worry about your loved one.
If anyone on these boards knows all the tricks to prevent nursing home placement its me as everyone else on here will just say "put her in a nursing home like we did and they are bad but its ok." If you need any advice feel free to ask. There are also home waiver programs where the state will pay someone to come to your house to help you.
So many programs to help i wish i would have known about your situation years ago, tehy could have been helping you all this time! :(
PS. If you do put her in a nursing home try to get her on hospice ASAP when she has less than 6 months to live , its more eyes and ears on here other than nursing staff who like you said are always understaffed. Hospice will give her a bath instead of teh nursing home. Some hospices are pretty linient tahn others and will put them on before they actually probably really qualify so call different ones. Ive seen some people get on hospice years before they die.

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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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As everyone has already stated, so sorry that you are going through this experience at this time. The advice you have already gotten is sound. After your mom is in this nursing home for a bit, use your eyes and ears and look out for things that raise red flags. The most important thing about any facility for our parent is quality of care. Make sure your mom is involved in activities, clean, and well fed. Make sure her surroundings are up to par. If you see other family visiting the facility, please get their feedback, ask how long their loved ones have been there, etc. Never be afraid to ask a whole lot of questions, and keep yourself visible. Do your research on resources for families in your city. Elder care, council on aging, etc. Ask friends or neighbors who may have been in your situation, or know of someone who went through your experience. Please remember to take care of yourself also. This is an emotional and physically draining time, as you have found out, so even though you love your mom and want the best for her, i am sure she would want to see you grow as a positive and healthy young woman. Hope this helps.

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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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Visiting her often is your best way to "check up" on your mom.

Getting on with your life is also a "best way" of caring for mom. If you would like to upgrade her nursing home or take her home with staff to help... it takes money. If you become more financially successful, then you have more options for mom's care.

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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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I would suggest you start looking elsewhere right away. I also use worker review sites as another view of the place...see if Aids are actually helping residents or sitting in the back room/office etc. If all other aspects look good, smell good and add up for what you need/want for your Mother ask about waiting list. Look up nursing home compare on Medicare.gov website-all places up to a radius will be shown and you can then sort by the highest rating. Go visit- the place a couple times, take a friend seems to help me too. once your have picked your top 5 or whatever off medicaid compare- Medicaid will only pay for a shared room- My state also has a nursing home compare site with family/resident ratings as another aspect to consider. As soon as medicaid kicks in you can move to a better facility-even if new place is a little further away etc. it is worth it in the long run to get good care for your Mother. I have found faith non profit, based/owned seem to have better ratings vs for profit-again in my area seems to be the trend. Good places (rated 4-5 starts) in my area have a long wait list for Medicaid beds-I hope maybe your area is easier to get in to a good place. I choose by the rating for staff-bad staff will probably mean less than great care and health rating matters too. But don't rely on the overall rating -sometimes seems to be higher even though staff and health are low-does not add up to me. Do your research now so that when you get the call of better available bed you can make the move right away-keeping in mind that most facilities have a notice to leave policy-around here is 30 day-check on this at your current facility.

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Thanks for mentioning the Nursing Home Compare on the Medicare website. That gave me a lot of good information about the facility where I'm placing my mom. They had some dings on their inspections, but nothing major. I also checked our state's database, which mirrored the federal site. Very helpful!

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Early onset Alzheimer's is generally very aggressive and most are dead within 5 years. You made a very wise decision putting her in a nursing home. I'm sorry you are going through all of this. Visit often and do a skin inspection every time, especially her buttocks area where most decubitus ulcers form.

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My heart goes out to you. My brother is 85. THAT is when things like this happen and you can somehow someway somewhere accept it. But your Mom is YOUNG, and so are you. Please know that you are doing the right thing. Your Mom will live years and she will live through what is your most productive and should be happy years. You will visit. I am so thankful that your mom is somewhat at peace in her life. I always recommend Dr. Oliver Sack to anyone who wants to read about our brains. To him the demented brain was a functioning brain with its own life, just not like ours, and unable to function in our world. He lived a life of deep fascination with it.
Get on with life now. This is what Mom would want. And of COURSE you are on pins and needles. This will be confusing to Mom. Sometimes they suggest you do not visit for a while to encourage adjustment. Try to follow their ideas, they often work.
Hope you will update us that Mom is doing somewhat well. After a year my bro has amazed me with his good adjustment. Initially he called it incarceration. Now he participates in everything and sees more movies than I do!

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Hugs and strength to all of us dealing with this.

Like you, I constantly worry somehow when the roles reversed it automatically embedded within. Sorry I don't have any big advise or words to ease the sitiation however, trust that things will work out as its suppose to.

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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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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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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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Go to care plan initial meeting & there you can talk about all your concerns, tell them about any recent falls, what she likes to eat, any activities she enjoys. Make sure she gets physical & occupational therapy. Have a week’s clothes in her closet. Put some $$ in for beauty parlor. You can choose her menu for the week. The PRI from hospital will state what her needs are. If she has walker, have her name on it. Talk to Nurse who will be taking care of her & try to meet & introduce yourself to her CNAs . Let them be aware she needs help with everything...& bathroom assistance.... & eating...can’t just leave plate of food in front of her & expect her to know what to do with it.
Its an adjustment...not only for her, but for you, too. It’s not expected at her young age, but you can still be her advocate at the SNF. My mother is 92..(93 next month) but dementia/Alzheimer’s didn’t show until after age 85.
Good luck with everything & HUGS 🤗

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Did the bad reviews come from a reputable website such as medicare.gov or word of mouth? It will be hard to relinquish control. If there are other family members, friends, church members to visit when you can't that would be helpful. I would make sure to introduce yourself to the staff so they know you. I've found being appreciative for care goes a long way. After all, the staff have a tough job and the salary is not in line with their responsibilities. Remind yourself that a facility is not the same as family care. In terms of your own living situation, would it be possible to find a roommate? Good luck.

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In terms of developing a relationship with the staff, an occasional sweet treat for them doesn't hurt either. When my mother in law was in inpatient hospice, we brought some doughnuts along with a thank you note and they were so grateful. The nurse told me that such kind acts are few and far between. She said they receive more complaints than compliments.

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You are not giving up control, you are focusing your efforts for the long run.

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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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Its unfortuanate that something couldnt have been done with the carpet to prevent falling

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Cleofox, how are you doing?
It's been a few days are you coping okay?

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So sorry about your mother. Will pray.

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Edit - So sorry *ABOUT*

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Hey everyone!
Thank you for all the responses, I appreciate them! I just made another post asking how to move her once everything settles. The place she's in is very understaffed for her unit and the lockward unit. My aunt and I are looking at other locations, but unsure of how to start that process.

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Give it more time...maybe just because it’s a holiday weekend...it was understaffed...I bet 90% of facilities were understaffed this past weekend. All the moving back & forth can further agitate your mother too. Hugs 🤗

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I must be losing it with my bad eyes, The edit had gone through the first time. So sorry.

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Mother going to Nursing Home today, I'm so anxious.

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