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.
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.
It's been a few days are you coping okay?
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
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 🤗
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.
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.
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!
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.
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.
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.
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.