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I've been caring for my grandparents since last October. I started out 5 or 6 days a week. My grandpa passed last February and I've been my 91 y/o grandma's caregiver 7 days a week. I've had 3 personal days in almost a year. About a month ago she started experiencing intense pain due to deterioration in her lower spine. She is now not able to lift her legs and is not able to get around at all without assistance and I've been here 24 hrs a day 7 days a week. I have no help and can't go home and she begs me to not to transfer her into a nursing home. She and everyone else just expects me to give up everything for her. I miss my home, my dogs, my husband, my life. I know I just need to suck it up and adapt but I'm only a month in and I feel like I'm losing myself completely. Thanks for listening to me vent.

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Exactly why do you 'need to suck it up and adapt'?? You are a granddaughter/son.........where is grandma's CHILDREN, aka your mom and dad? Why have you been relegated to be this woman's 24/7 caregiver? And what about YOUR home, your husband, your life and your dogs? Why do they get to suffer while you devote your entire life to caregiving 24/7???

And what person who claims to love their grandchild 'begs them not to transfer her into a nursing home' and acts THAT selfish, knowing the huge burden they are not being able to get around AT ALL? Are you lifting this woman? What happens when YOU need to call 911 for YOURSELF and your own broken back?

This situation is not sustainable at all, yet for some reason, you feel beholden to your grandmother as her only source of help 24/7, to your own detriment, and at the expense of your family!

I say, tell your parents or whoever else is grandma's POA that you're giving your 2 weeks notice. If there is no other next of kin involved here, give grandma one month's notice that she will be moving into a nursing home, that you've done your level best ALL this time to care for her, but that you're not going to sacrifice your health, your back, and the rest of your life in servitude to her for no good reason now that she's become immobile. You love her and will visit her often in her new location where she will have others to socialize with and an entire staff to wait on her 24/7 rather than one exhausted and burned out human being.

Wishing you the best of luck seeing this untenable situation for what it is. Unstick yourself right away, you can do it!
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Grandma’s begging has 100% nothing to do with what living situation can help her be safe and in less pain.

You may be jeopardizing both your welfare AND HERS by staying in a situation that is NOT MANAGEABLE for you to do.

Be prepared for family members to be mad (or furious) at you- if you bow out THEY may have to actually HELP, and NOBODY wants to do THAT. Ooops, you’re actually doing it…….

Does anyone have POA for Grandma? If so, inform them that YOU ARE FINISHED, as of whatever date you choose.

DO NOT talk to Grandma about her situation or yours. Do not say goodbye to her.

JUST LEAVE.
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You don’t need to “suck it up” for your grandmother!

Go home. Live YOUR life! I am not a grandma but if I had grandkids I would want them to be happy living their own lives.
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Go home
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omg. Is she totally broke? Is there no private care that can at least give you a couple nights to sleep in, or w/e? At this point I hit my lower limit (upper limit we haven't gotten to yet) and somene is comking out to asess my mom for a few hours of in home care a couple days a week so hubby and I can get out etc. They said also can do stuff like have someone overnight to handle medication dosings etc. In my case tho it is out of pocket as theres no long term care insurance, but I know there's some leeway in my moms income to handle afew hours a week so I can get out of the house and blow off steam or, yikes, even just lounge in bed a few hours.

Difference is my mom is on hospice and its not a "no one knows" dx at this stage. So. Her sundowning is going to ead to, well. The actual setting of the final sun, soon. But if there's no such dx with your grandmom. IT's just not fair to you.


as someone who knows where MY family is, I can ask, but not dramatically :/ where your gma's is. I am the daughter and would never saddle my neices with this. The ones who would help, just lost their father this year and I don't think they're ready to handle a grandparent on hospice yet after that. :/
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Thank you for advice. It's definitely helped a little in expanding my thought process. I'm P.O.A She has two sons that have passed and her daughter, my mother, is in the hospital with a perforated duodenal ulcer. She has a long road ahead of her as well. I appreciate the feedback so much. I told my boys (21 and 25) that they will never take care of me. I would never put that burden on anyone, especially my children/grandchildren. I've tried to talk about how I feel to people I feel close to and I usually get "you're so lucky to have your grandma and you'll appreciate the time you have had with her". I'm sure I'll have some Good memories, but most of what I experience is huffing and puffing, and cussing under her breath because I don't do or say things as she wants. She's not mean but it's very upsetting feeling like I can't seem to do anything right. She's hard of hearing too so I'm basically yelling all day. She refuses a hearing aid because of vanity. Sorry, I'm still venting. Thank you guys so much for listening. I've been feeling so down the past few weeks.
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ElizabethY Jan 2023
Hi annit77,
I agree with the other posters.
And I can't help you with much, but I used these two things with my mom-same problem, won't use a hearing aid. These are big enough they won't get misplaced, don't cost a lot, and are easy for an elderly person to use. I got them at amazon.
''Reizen Mighty Loud Ear 120dB Personal Sound Hearing Amplifier''. It was about $35.00 when I bought it, it's about $50.00 now. This one is easy to use--it just has an on/off switch and a volume wheel. (There might be cheaper ones out there.)
I also bought these cheap headphones-they work great and don't get lost.
''Panasonic Headphones, On-Ear Lightweight Earphones with XBS for Extra Bass and Clear, Natural Sound, 3.5mm Jack for Phones and Laptops, Work from Home - RP-HT2''
When I found myself raising my voice at my mom because she couldn't hear, I would also start to feel my level of exasperation rise. Not a good place to be. I had her put on the amplifier and headphones, explaining that I didn't like to yell at her. Whenever she had issues hearing I would stop, hand them to her and then talk once she had them set. The headphone jack should be compatible with older ipads and some phones, so if she wants to listen to music that way that might give you a break? Listening to music would put my mom in a good mood.
But yeah, you've put in your time and your grandma needs an alternative.
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What does your husband say about this situation?

In an emergency, yes. A few weeks. A month, even. After that, no.

Your vows were made to your husband. He comes first.
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Gosh this is a cry for help - You need some support - its too hard to do alone I Know because I have done it with 3 people . Really sounds Like she does need a nursing home . Screw every One - I hate that when everyone else has a Excuse and they choose the Kind person to do all the work . Make a boundary . You sound Burnt out . I collapsed around September 15 from exhaustion . Maybe someone could Move In with her - Hire someone from a agency if Not Its time to either call 911 and Have her admitted and have the case manager transfer her out to a rehab or NH . You should Not be the Only One alone doing this Job . Where are your parents they need to take Over. Just say " I have had enough this is your parent do your job and stop taking advantage of me . I am going Home . "
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It seems the 'step in to help' was actually like the frog that jumped into the pot. Now the water keeps heating up & you are being cooked up..

I'm going to come at this problem slightly different way.

Who choose to 'jump in'?
To come stay with the Grandparents & offer care?

Was there a time period placed?

Were there other conditions or boundaries?
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annit77 Jan 2023
You're right. This was ultimately my choice. We have a very small family and there is really no one else to help. It was a gradual process. I started out 5 days a week caring for her and my grandpa which involved Dr. Visits, running errands, meals, etc. When he passed away, my grandma took things really hard and I became caregiver 7 days a week. She doesn't understand how to pay her bills, make appointments and even struggles to use the phone. Over the years (beginning when I was very young) she would ask me to take of her if something would happen to her and she could no longer care for herself. She would say *promise me?" And made it very clear that she would not under any circumstances live in a nursing home. What should have I said? No I can not take care of you? Yes probably I should have.
So now I'm here 24 hrs a day after her last hospital stay. It was my choice because of feeling obligated and of her having no one else. It's tough and I have very difficult decisions to make. I appreciate you. Thank you
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Hi, Annit. I want to start by saying I think you're a great person to be trying to help your grandmother and also because you will not put the burden of caregiving for you onto your own kids. Most people don't understand what a burden it is.
You've done your best and now it's time for your grandmother to go into a nursing home.
When you say 'she and everyone else just expects me to give up everything for her' who are you talking about? Siblings? Other family members?
I'm so sure your kids and husband don't want to see you so beat down from caregiving that you're utterly defeated in every way. I'm so sure your friends don't want to see that either. So we are left with the people who do expect you to be a care martyr for grandma.
You don't need them. You need the people who want the best for you. You need the people who love, support, and care about you.
Not these people who carry on about how lucky you are to be allowed the great privilege of being an abused caregiver.
Cut these a$$holes out of your life. It doesn't matter what they think.
You have her POA. Put her in a nursing home. If you don't know how to do this, have her brought to a hospital ER and ask them to do a 'Social Admit'. Make sure to use this term. Tell them that you are unable and unwilling to continue being her caregiver and that she has no other support at home because you're going back to your home and family.
The social workers will try to talk you into taking her home. They will make all kinds of promises of care services and resources available if you agree to.
It's a lie. You will get little to nothing as far as these care services and resources are concerned if your grandmother is not rich.
If you stand your ground and refuse to care for her at home, the hospital will admit her and will keep her there until they find her a bed in a permanent care facility.
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annit77 Jan 2023
Thank you. You are correct. The last time she was in the hospital we were promised home health and physical therapy. Nothing happened. I called several places to find out what was going on and insurance had denied the request. I'm going to set a date and give myself a time limit on caring for her. If nothing changes I'll make the necessary hard decisions I need to make.
(23)
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I hear you and deeply understand your feelings and hardship. You're an incredibly caring and giving person. That's all I want to say. I believe others may have many good advice.
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annit77 Jan 2023
Thank you so much. You're very kind.
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“I know I just need to suck it up and adapt.”

No, you do not. Your husband and family come first.
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Feelings of guilt and obligation do not equate good care. Grandma won't get better or be in less pain because of guilt and obligation.

Find a facility that will meet Grandma's needs, tell her you are not abandoning her, then visit when you can.
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annit77 Jan 2023
I do love her as well. I didn't mean to sound harsh. I was only venting. There are no happy endings here and many emotions. I do care for her for the best I can and I do have a medical background. I'm going the best I can given the circumstances. I'm going to try to reach out to a social worker, and maybe try to get some guidance. It feels impossible in my area to get help. It seems like help if only available if you're rich or extremely poor.
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Annit, here is a listing of the AAA's for Ohio:

https://www.aaa7.org/site/476/aaa7s_10_counties.aspx

Call them and tell them that gma needs to have a "needs assessment". Get that scheduled.

Getting a social worker is a great idea.

How long ago was the Home Care denied? You may still be able to appeal that. Never take "no" for an answer when it comes to insurance. I take it gma has a Medicare Advantage plan?

If gma has assets, they should be used to pay for caregivers in her home. Or she needs to apply for Medicaid if she is indigent.

Have you considered a hospice evaluation?
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You need to get help from your counties senior services. Here in my county we only get 20 hours a week, 30 still due to COVID thankfully. The caregiver I get for those hours is priceless and save my sanity because being a caregiver is extremely tough!!
Then get a hold of social worker, maybe through your gm doc. They will help you keep up with other issues. It's not a solution but it is a good start... help and time to yourself. Good luck to you, it takes a special person to do what you are doing.🙋
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No, you don't need to "suck it up". I did this myself at age 35, moving back home to take care of my grandparents, but I was not married and had no kids, not even a dog. And I would say it was the hardest thing I've ever had to do, and very disruptive to my life, in general. Unless you are willing to allow your relationship with your husband to disintegrate slowly, and have no current career ambitions, you need to seek alternatives for your grandmother. Those include nursing home care, despite her attitude towards that. Even if you decide to undertake this, understand that your emotional health will greatly suffer (mine did) and your grandmother could easily live another year (or two, or three). The bottom line, you WILL burn out and could even suffer mild PTSD from the sheer intense nature of this caregiving. I certainly did. Even today, I cringe in hospitals and become anxious when I reflect on this experience. But it was, by far, the most spiritually rewarding thing I have ever done in my life. Be very careful with your choices going forward.
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Wow. I hear you sister. I started smoking pot. You might want to look into a medical marijuana card. It makes me laugh when I want to scream and relax when I'm just plain working too hard. Where are you? I think some of us on this site should move in together. I try to make everything clean everyday and I play beautiful healing music sometimes with aromatherapeutic sprays, candles, anything to bring a spiritual, quiet zone but my siblings have turned into vultures and treat me like a subordinate. I have no advice except you have a right to be seriously pissed off. I've been caring for mom who has dementia for 8 years when all of a sudden my 4 siblings decided to stick her in a bad memory care facility and kick me out of the house after I left my career and home at my fathers request when he was on his death bed. I'm seeking an attorney. Take a deep breath and know you are good, beautiful and true.
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PatsyN Jan 2023
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Sorry, your grandmother requires either 24-hour help in the home or in a facility. You require respite help to save yourself and welfare.
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Your current situation is not good for either of you. You deserve a life and if you keep going as you are it will take its toll on you both mentally and physically. You shouldn’t be punished for being a good and caring person but that is what is happening.
As the caregiving takes its toll on you, you won’t be able to give her the best care. When you are burnt out and exhausted you will eventually make some type of mistake, be it physical such as not moving her properly, or do something like miss medications or make other mistakes. You can end up injuring yourself and/or her.
It is in both of your best interest to have her in a facility where she can get around the clock care from people who have experience with the new issues as they come up and have others who can help them when a task requires more than one person. That will leave you free to visit her and spend more quality time than you can now.
It will be a hard thing to do but stand firm in spite of her objections. You deserve the rest and she needs more than one caregiver.
Good luck!
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You are not obligated to sacrifice your life for her. Find a nursing home snd put her there. You can visit her there. No one feels obligated to help you so why are you obligated to help her? The situation is unfair to you and you have a right to your own life.
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It is time to re-evaluate your situation. I don’t see how your husband or you would be happy to put up with this.

You can’t work 24/7. It would be better to actually look at skilled nursing for your granny or to have caregivers come in if it is possible (cost).

what happened to the rest of the family? You could walk away - go home, because you do need relief. Someone else in the family will have to step up.
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As the passengers on a plane, you must get the oxygen first to be able to help those around you. For me it has taken a year to grasp the entire situation. What was right for me might not work at all for others, get someone to help with Grandma, she needs you to be your best to help her. That has been my stance, I still have days, weeks but I do have a helper, caregiver that is a tremendous Luxury if you will.
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BurntCaregiver Jan 2023
@BioMom41

I never liked that aviation comparison saying about putting one's own oxygen mask on before someone else's. Pretty much when the masks come down on that plane is going down anyway. The grandparents need to be placed or have other care arrangements made for them.
The OP should just walk away and let the actual kids of the grandparents' work something else out.
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I was in the exact same situation with my mom. My mom had dementia and absolutely refused to go to assisted living or nursing home. I spent at least 4 years being at her beck and call including living with her sleeping on a blow up mattress.. I have a sister that lived closer to her but refused to help.
You absolutely do lose your own life and what's even worse now is that she passed away last year and I feel even more lost now. Not because she's gone, I know she's in a better place, but because I have lost myself and some friends that I could not see in all that time. I am trying to get on with my life but it's been so hard. I don't know what my purpose is anymore.. so please don't let this go on for as long as I did. The lasting effect is not good on ones mental health.
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BurntCaregiver Jan 2023
@CJLC1234

It breaks my heart to see so many people and families being obedient still to a demented senior.
It's so hard for families to accept that once the elder starts needing caregiving, they cannot be allowed to call all the shots anymore. They cannot be allowed to be in control of everything and everyone.
Pretty much every elderly person absolutely refuses to go into an assisted living or a nursing home. Or even to allow anyone other than people of their own choosing to help them at home so they can remain at home.
This does not mean that they have to be obeyed. We do not obey the demands of a toddler or little kid because they throw a tantrum. We know that they do not have the capacity to make reasoned and logical decisions. We don't engage in a fight with a toddler or little kid either. Granted, I've seen adults who have and who will obey the child which is totally wrong. A senior with dementia is pretty much the same thing. I was an in-home caregiver for 25 years. I wish I could have told you what I told every family member who was at the end of their rope with some senior LO's 'stubbornness'.

Caregiving is only successful when it's done on the caregiver's terms. Not the care recipient's.

If placement is in the best interests of a senior and their family, then the family should get them placed.
If homecare is an option then families should try it. If the 'stubbornness' gets to be too much, that unfortunately usually has to result in families waiting for something bad to happen like a fall.
I am sad for you that you allowed yourself to be a care slave for so long and I hope you find the closure and peace you deserve.
It's still a choice though. Like you said your sister refused to help. She chose to not be a caregiver and is not wrong for making that choice.
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Why did this care skip a generation? Where are your grandmothers children aka your parents?

You're not stuck, you're just refusing to tell your grandmother that she needs more care than you can provide. Remind her that you have an obligation at home...your husband. Tell grandma you will do everything you can to find her the best care. Then call other family members and demand that they relieve you so that you can get a good night sleep before looking for a long term care facility for grandma. If they refuse, tell them the alternative is that you call adult protective services on your way out the door to go home.

Tough love is the answer.
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For your well being and her well being, please share all of this with her PCP and see guidance for either in home services or placement to assist her. She of course will resist either. If she is cognitively alert and able to understand, you can simply tell her that you must put things in place for her care and safety and, in the event that you became ill or unable to continue the care ( which you are already), her care needs will be met. You do not say if POA or other legal documents are in place; if not, suggest that you get these accomplished with her while she is alert. If they are in place and someone else in the " family" is POA, shame on them for expecting you to be in such a difficult position.
You will become ill if you continue this schedule.
Get help.
Get the rest of the family together and tell them you cannot and will not continue.
This is an unsafe situation for both you and for the grandmother.
You can also just walk out and call Adult Protective Services and tell them about the situation in the home with no help and patient decline. Or you can remain in the home and still report the pt. decline and unsafe conditions with pt mobility and your lack of support to APS to begin to get the help you need.

You can also call 911 when she needs to be moved. Have them transport her to the ER and from there you can assess the situation with social services and, have them place her somewhere for ' rehab' or other reason , while the " family" is making other decisions. Do not let them send her back home.

Pilots , train engineers, doctors and other professionals are not allowed to fly, operate trains or perform surgeries etc after x number of hours without being " OFF" as it is dangerous to the passengers and patients. It is not different for you as a caregiver. However, because you are in the home, ( as it is for many many people) it is not as visible and hence goes unnoticed.

Please get help.
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“ Do not light yourself on fire to keep someone else warm.”

Nobody WANTS to send a loved ine to a SNF. But you cannot give up your life and marriage.

is bringing her into your home an option?
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BurntCaregiver Jan 2023
@XenaJada

I certainly hope that bringing her into the OP's home is not an option.
The situation will be exactly the same only in a different location.
The grandmother either has to have live-in help or she has to be placed.
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Ok, you've vented. Now you need to heed some of the great suggestions on the forum. I personally don't think anyone should have to give up their life to take care of parents, grandparents etc. unless they totally want to but consider who else you are harming with your current action. Your husband, your pets all need you. 24/7 for one person is a lot of work. Ask the nurses in NYC who went on strike this weekend -- not just for better wages but for more staff so they can provide adequate care for patients. You just can't do it all by yourself. And what happens to GM when something happens to you?

As has been suggested, get in touch with your local Office on Aging and find out how to get a full geriatric assessment. GM may be eligible for some home health services or they may suggest some form of hospice care. In any event, let the family know that you are going back to your family on X date and will only be available for x hours per week to help out..

Now if she goes back to the ER at any time before the OoA assessment. you find the ER social worker and tell them that they can do a social admit because you are leaving "right now" and there is no one at home who can care for her. They will try to tell you to take her home and they will get you help. You grow tomatoes on that line of bs!! It's lie. Smile at them and leave, yes GM will be crying and begging you not to leave .. keep walking and don't look back. It will be one of the hardest things you will ever have to do; sometimes you have to steel your heart to do the right thing when you love someone. And in your heart you know that your staying with GM 24/7 while your marriage disintegrates is not good for GM, you or husband.
This is a difficult journey but you can do it. Peace
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BurntCaregiver Jan 2023
@geddyupgo

The line about growing tomatoes on that line of bs was awesome and also totally true. Everything you said is spot on too.
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Annit,

You said that the last time your mom was in the hospital she was denied home health.

From what you have said, your mom is in need of permanent placement in a facility.

Do you understand how home health works? My mom did it rehab and home health more than once. She benefited from it.

Mom had Medicare and Humana Gold Plus. The insurance won’t even pay unless the patient is able to improve.
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Just about every single care giver on the planet has guilt on top of guilt about not being able to be there 24/7. But the reality is that you just can't. Your family has to come first. Get her into a care home asap.
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I’m sorry you are going through this. You won’t like what I’m going to say.

It’s probably best to get her into a facility. If she’s in pain, she can’t just suffer. Spinal issues are serious and she needs nursing care 24/7. Not home care.

You have done the best you can. Your family needs you. There comes a time when you have to let go and let medical professionals take over. Is there funds to hire nursing care for her at her home? It will will need to be probably an actual nurse. You could try that. Maybe you come 2-3 times per wk and hire the rest. If not, then a facility is best. You can visit everyday. If she’s able, take her to lunches or dinners. Make her room as comfortable as you can. I hate to say it, but it’s possible she may deteriorate faster in a facility. However, she could enjoy being around others her own age too. It could go either way.

You have given your all, now it’s time to change things so she gets better care and to retain your own life. Love her all you can, but sometimes love is doing difficult things. Good luck.
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