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reneeantonia Asked November 2023

I just moved my mom to memory care and I feel like I made a huge mistake.

When we began looking at facilities, my mom thought she was going to assisted living. Memory care is very different. The shock of this move on her I feel has made her worse quickly. I focused on the nice room and activities available. I should have focused more on the staff. She is very unhappy. Some of them are not very nice, I have witnessed it myself. They also do not take them outside daily. She was used to daily walks with her dog. She has been calling me every night crying for hours. I visit every other day and somehow it makes it worse. She is not as far gone as most of the residents, which I think makes it worse too. She lived with me the last 5 years and she misses our dogs and my son , her grandson. My son and I just could not manage her needs, we were all arguing and the stress was unbearable. I almost immediately saw how bad I was at managing dementia when we moved her. I miss her terribly and feel like I should seek another facility. There is one close by that is all memory care and has nurses trained in dementia 24/7. It is slightly more expensive and she only has about one year worth of funds to stay. We would lose one month of rent for leaving early ($8k) but her comfort is the most important thing. Isn’t it?? Or should I move her back home and hire help? Maybe change my job so I can care for her part time ? I keep telling her to give in more time. My heart just hurts for her. I cannot leave her in a place she isn’t doing well. I see her slipping away faster than when she was at home. This doesn’t make sense to me. She cared for me her entire life, and I feel like I’m abandoning her now when she needs me most. I feel regret already. Any advice would be appreciated. I am alone with no family help except my amazing 22 year old son. I am 52.

William007 May 29, 2024
My mother had a rapid decline in the last few months with dementia. Father recently died and she declined. Living on her own 1 month, AI next. Good place, no staff. Now MC. She is the most active person there and I sure it was a lot for her to see. Now I am lucky, the staff is amazing and activities are daily. Her at home with me was a living hell. I’m also 52, son 20, just us. Day time was fine night time hell. She did sleep, walked the hall ways making noise and would argue with me for no reason. Very close family. Never argued before. I visited her everyday at the AL. Not this time. Fortunately the staff is amazing. This is where they need to be (my opinion). Dementia sucks. You are definitely not abandoning her, you are making sure she is taken care of. You and your son are young and alive and HAVE to live your lives. I finally can get sleep. Guilt is gone. Dementia is not my (our) fault. Still angry it’s a thing and I miss what mom was. She still knows me and my son. Just more of short term, which is getting worse. This place will take care of her until the end. Other place might say they are mc, but are truly not. Very expensive, sucks. You have to take care to of yourself. Physically and mentally. Same for your son. I have had a very stressful job for 30 years. Never talked to a “support” group until this dementia stuff happened. This group is amazing and helped. My job is nothing compared to seeing mom like this. All this happened in a short time. Doing fine, then wandering in March. Make sure you have your life, if you don’t, get it back now!!! Easy to say but it’s a must.
NeedHelpWithMom May 29, 2024
Old post.
Daughterof1930 Apr 25, 2024
Post from November with nothing further from OP
Fawnby Apr 26, 2024
In that case, OP has probably taken mom home. Now there's no time to do anything but be a 24/7 caregiver.

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Anxietynacy Apr 25, 2024
You need to do what is right for you. It may be bring her home, getting more help, it may be a new facility, or waiting it out.

But what ever you do , do what's right for you, figure that out and then educate yourself as much as you can. Then make a decision. But really educate everything before you make the decision.

brandee Apr 25, 2024
Dissenter here

I'd bring her home and hire aids. It sounds like she is pulled together enough to walk dogs outside daily. She is also pulled together enough to call you daily.

It would also be less money than a facility.

8 hours x 30 per hour x 7=$1680 per week x 4= $6720.

It would be cheaper not to have coverage on the weekends but it sounds like you need it for a break.

Have caregiver walk outside with her and her dog several times a day. When you hire the caregivers specify they will be walking outside several times a day. You take a huge step backward and let caregiver function with Mom.

It would be cheaper not to have weekend coverage but it sounds like you need it for your own mental health.

If hired, you need to make a point to do your own thing.

We had caregivers for Mom in the home. I believe the multiple daily walks with dog really slowed the progression.
Fawnby Apr 26, 2024
Eight hours a day are not enough. I hired aides for my parents. Memory care is 24/7, and they only get worse, not better. We needed one 24/7 live-in CNA plus relief aides and others to be there when needed to help the live-in. I was there to help when necessary. Home care done right is more expensive than 24/7 care in a memory care unit.
HappyRobin Nov 2023
I agree with others she might not be delighted anywhere.

However, I believed the promises the facility made about my mom, but she ended up being placed with people much further along, they did not take her out as promised and they missed delirium and a nervous breakdown, then inappropriately medicated her, and all went downhill from there unnecessarily.

My second mistake was not listening to my gut. You know your mom better than anyone at this point. Tell your heart to be quiet for a minute and sit at the facility at different times and watch how they interact with many other residents. (Edit) Temporarily hire some home health aids to visit her for a couple of hours and report back (they’ll know what good care should and can be) or get PT in to observe. The PT ultimately saved my mom. He knew her and started flagging disturbing stuff and because he was a professional, her outside docs listened to him so we got her out.

This place might be the right fit with some tweaks, but my uncle moved into a different memory care with a wider variety of levels and many more suitable activities and was incredibly happy until his passing of something unrelated, so it is possible. They had walking paths people were allowed to use as they liked and that mattered a ton to him.

Also (and I’m going to shout) DON’T JEOPARDIZE YOUR JOB!!! Been there, did that, paying a lifetime price, highly do not recommend, and worst of all, it will only temporarily stave off the inevitable. Find the best place you can within her financial means and adjust. Some things matter a lot, some things not so much, some things are tweak-able.

Mom now is at an adequate board and care. This transition went much better because I, her friend, some of our previous care aids all visit her regularly and have since day one, and she doesn’t feel abandoned now like she did before. That 2 wks at the beginning thing depends a lot on your loved one’s personality and your dynamics with her.

Good luck. It’s hard no matter what you do. Sending you all good thoughts.

Fawnby Nov 2023
It's like when your kid goes to camp. The first phone call is always that they don't like it there, come and get me!

Leave mom where she is and wait for her to adjust. Don't be eager to pick up the pieces, don't necessarily believe everything she says, or find her a new place. She probably wouldn't like that one much better.

Are there therapy dogs who visit her new home? Ask. If not, there may be a program that could be set up. My neighbor's dog is a therapy dog and visits several AL and memory care facilities every month. A nearby facility has their own dog living on the premises. The residents get to walk him. Another facility near me has a bunch of little dogs and they visit the reseident buildings with the owner of the facility. Sometimes he brings puppies! He breeds them in his adjacent home.

Don't move mom home with help. That puts you in charge of managing the whole thing, which is difficult (I did it). Don't change your job. That requires even more of an adjustment for you when you need to stay strong and resolute.

Let it roll along. Mom needs to start socializing with new friends and enjoying as much as she can. I agree that you should stay away so she can adjust.

anonymous1732518 Nov 2023
Interesting to read this ad today it is a real crap show at the facility, even with one of the nicest and best nurses on the floor.

That being said, your mom sounds similar to a resident here She also laments being in the facility, does not get along with her roommates, and was upset about her medication.

Maybe your mom needs time to adjust; though she may never totally accept being in a home.

AndSoItGoes Nov 2023
Reneeantonia writes: “Some of them are not very nice, I have witnessed it myself.” I’ve seen it too, reneeantonia. It frustrates me because I think, “At the end of this shift you (most of you, anyway) get to go home and have your own life. Can’t you just get through this shift without abusing the power you have over mom (and me)?” 

But ultimately the problem is much bigger than any one individual employee or one workplace. The nursing home is a “total institution,” like a prison. These places are “efficient,” and efficiency is apparently the altar at which society will sacrifice pretty much everything.

Some of the recommendations people have posted about possible alternative placements do sound promising. There are, it seems, still people out there trying to do better (though trying to find these alternatives sounds pretty daunting). 

A few more (unsolicited) thoughts:

1. I love the way people on this forum respond to all of the posts and really try to help people in crisis. It’s the sort of thing we all talked about in the early days of the internet, before so much of the internet went sour. If I had faith in humanity, I would absolutely point to regulars on this forum as examples of why.

2. Ultimately, though, stories like reneeantonia’s, which come through this forum pretty much every day, suggest that the human experiment has failed. The warehousing of the old is, I believe, on a continuum with the transition from small-scale farming to industrial farming. In the name of efficiency humans have created forms of cruelty well beyond what exists in the wild. It’s really sick. We’re almost 100 years into “exposés” of what happens in institutions, and things seem to just be getting worse.

3. We should mourn this outcome rather than trying to normalize it. We can acknowledge the horror and impossibility of reneeantonia’s position (and her mom’s) without suggesting that it had to be this way or is just the way of the world. (To be clear, I’m not disagreeing with any of the advice already offered to reneeantonia. Just feeling sad about humanity and grateful for the promise of an ultimate sun death.)

MeDolly Nov 2023
TT the director, my stepmother also enjoyed walking outside, we spoke and they now have daily walks for all who want to go.

You cannot care for her, she will continue to get worse. This disease has no cure.

Give this some time, you are overreacting, acclimation all takes time. Money management is key, don't spend anymore than you to as she will have to go on Medicaid and into a nursing home.

I wish you the best.

lealonnie1 Nov 2023
Dementia is a no win situation for ALL concerned. Nobody wins when dementia is at play, trust me. You are unable to Care for mom anymore at home, so you placed her in Memory Care Assisted Living which she now hates. Yet the arguing and stress at home was unbearable, so everyone was unhappy there. Now she's unhappy in MC. She'll also be unhappy in MC #2, 3, 4 and probably even in the Palace of Versailles because dementia causes misery in general. This is the truth of the matter.....dementia is a no win situation. So you do what's best and SAFEST for all concerned. That's Memory Care and don't look back. She will adjust and life will go on.

If the aides at moms current MC are rude or whatever, speak to the Executive Director about it right away. Tell the ED you'd hate to move mom but you will if something doesn't change.

In the meantime, stop feeling guilty about something you didn't cause, can't cure and can't control. My mother lived in Memory Care Assisted Living for nearly 3 years and did fine, albeit her chronic complaining which would've happened anywhere on earth.

Best of luck.
Abli64 Apr 24, 2024
That first paragraph was the wake up call my sister and I needed. We recently place our mom in a memory care assisted living. Thank you so much for your words of wisdom.
AlvaDeer Nov 2023
I would advise against moving your Mom home. She may have many years left to live. You are 52. There is no way that your son should be spending his twenties, very formative years in leaving the nest and making his OWN life, getting education and job, doing this.
You didn't create your mom's dementia. You can't fix it. Guilt is out the window; but it is worth grieving.

I would check other facilities and I would move Mom, yes; that is an option. If you are looking for ideal it isn't out there, but what IS out there more and more is an intermediate facility, where there are locked cottages with about 14 residents each, who CAN go out with staff to walk the dog, who CAN get along in community and enjoy their time. My brother's facility in Palm Springs had such intermediate care.

This is hard for you to see. But throwing your own life and you son's (worse) onto your mother's funeral pyre isn't the answer. Life is full of difficult transitions. For us elders (I am 81) this is our last; it's full of losses. That's the norm in it. Please dont add the tragedy of sacrificing your young to it.

I wish you luck. MC is very expensive. I hope you find care less expensive. Do consider Board and Care which is often family run and fewer residents, more personal care. DON'T expect Mom to love it. Sorry. That's not going to happen. She wants to come back "home". YOUR home. To YOUR life and that of your son. I advise you not to let that happen. Embrace the sadness and grief of this transition. The only way out of it is through it. I am so sorry and wish you the best and hope you'll keep us updated.

JoAnn29 Nov 2023
I would say something to the Director about how the aides respond to Mom and other residents. These aides should be trained or have experience in how to handle Dementia residents. They should have the patience of Jobe. If they do not know how to handle Dementia, they should not be in a Memory care facility.

Grandma1954 Nov 2023
Your mom would probably have been just as unhappy if you had moved her into Assisted Living. ANY move with dementia is difficult and the person most likely will decline.
Does the other place that you like better accept Medicaid?
Does the place she is in now accept Medicaid?
If the "nicer place" accepts Medicaid then move her.
If the "nicer place" does not accept Medicaid you will be moving her again in 10 months give or take.
If the place she is in now accepts Medicaid she will not have to move when you have to begin the application process.
If the place she is in now does not accept Medicaid you are going to be looking for another place but you have a bit more time if you leave her where she is.

No matter where she is she will not be "happy" but she will be safe, she will be cared for and you can return to being her daughter and not her caregiver. Your son can be your amazing son and grandson and not be a caregiver. (that may end up resenting you and grandma)
Choosing to place someone in a facility that meets their needs is not a failure on your part it is an admission that their care is beyond what you can safely manage at home.

funkygrandma59 Nov 2023
It sounds like you didn't do what is always suggested to family when they place a loved one in memory care and that is to stay away for 2 weeks to let their loved one get adjusted to their new surroundings and the people around them.
I know that sounds almost cruel to do that, but it's been proven to work. I've had friends that stayed away for the 2 weeks and their loved one adjusted fine, and I've had friends that didn't stay away but went every day or like you every other day, and their loved one had a much harder time adjusting. Perhaps that's why your mom is having such a hard time adjusting, and you may want to rethink how often you visit for a while.
There is nothing easy with this horrible disease of dementia, and you're doing the very best you can with your mom.
Should you bring her back home? No, as her care will only get worse as the disease progresses. Should you move her to the other facility? Not yet, as I don't believe you've given this other place a fair enough chance. Plus NO place is perfect.
Anyone that has had to place a loved one in memory care will tell you that it's one of the hardest things they've ever had to do, but often it's not only in the best interest of the one being placed, but for family members as well who realize that their loved ones care is just too much for them.
You've done the right thing in placing your mom where she will receive the 24/7 care she requires and be safe, and where you can get back to just being her daughter and advocate.
So give mom time to adjust to her new home. And if that means you have to stay away for a while, then so be it. And you may have to take away her phone so she can't be calling you every night. Either that or you just let her calls go to voicemail, and you just check in with the staff daily(if you need/want to)to see how she's doing.
None of this is easy, but you must now accept that this is what's best for all involved.

LoopyLoo Nov 2023
It’s rough but you couldn’t give Mom the care she needs. Not because you’re a bad person, but because you’re not perfect! Unless you are an RN, therapist, pharmacist, and security guard all in one, and can do it all on no sleep ever!

If you want to switch to another facility, sure. But do not take her home. Not even for a few days or even a few hours. It will be painful for you and her on every level.

cwillie Nov 2023
Yes, quality of life is important and in your shoes I would make that a priority. But you also need to plan for the long term as despite her dementia she may have decades more to live. I think you need to work with an elder law attorney now who can help you understand Medicaid and get your financial ducks in a row so that when the time comes to application process is smooth. Some better homes do not accept Medicaid residents unless they have already been self paying for a period of time, that should be a consideration.

waytomisery Nov 2023
Try the other facility that has all memory care. Have Mom put with residents more at her level .
If you move Mom back home it will be next to impossible to get her out again . Her needs are only going to increase , increasing your stress and the situation will get worse for all . It will take time for all of you to adjust .

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