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loss of my personal freedoms
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CookieKing Jun 14, 2025
I feel this. It is depressing. I have no children of my own. My wife and I are approaching retirement and we want to live abroad, travel, enjoy our own senior years. If we stay for Mom, that is totes unfair to us. If we do leave, my sister will carry the burden alone. How is this fair?
Meanwhile, Mom is in IL and will not participate in any activities. All she wants is for my sister and I to be with her. I have no answers today. But I am sorry for the loss of freedom you are experiencing. The struggle is real.
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Dealing with this family that I am a part of! I have never felt such EVIL in my life! It drains you! Just want to take Dad and run away!
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Mazyme1 Jun 2025
Amen! Evil and judgement just oozes out of everyone.
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The absolute psycho hose beast I become to my husband when I walk in the door after a long day with two anxiety ridden people who turn everything into a emergency. Can't find her glasses? Call 911, start crying before we even look. Oh look right on the arm of the chair... Bowel obsessions, one hasn't gone/can't go the other can't stop going and neither of them can stop talking about it. Everything is either "terrible" or "horrible", whether it's the pizza he ordered, the roads in town, the weather... Oh let's not even start with the minute by minute weather report. Did I do this, can I do that. Why is the volume on my phone low, how did that happen.
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lkdrymom Jun 23, 2025
Thanks for the bowel obsessed memories. Stopped taking him to restaurants because he would talk loudly about his bathroom habits. I'd take care of something, and he'd ask "Are you sure? Call again." As if I had nothing better to do. Every piece of junk mail was a crisis to solve. And every single phone call from him started with the line "I've got a problem...."
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Feeling guilty for not wanting to socialize all the time or even be around my LO
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JRwornout May 2025
I'm with you. I'll add feeling guilty because I now absolutely can't stand to hear the same stories over and over.
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How one friend (who knows how hard 10 years of caregiving was for me) told me what a ‘lovely caregiver of a daughter’ I was (her expression) for visiting my mother today on Mother’s Day. I explained to her that I am now a former primary caregiver (she didn’t reply). I actually shuddered when I read her text. I truly dislike being pigeon-holed in that way.

It is as though people simply don’t want to understand that the loss of my identity was profound.
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I think the worst thing is that people don’t know how awful it can be. They stop by for their “visit” and then get on with their lives. They go on vacations and have fun and you are not. They don’t have to stop by and help so they don’t. They don’t have to live it.
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AnnieG25 May 2025
1,000,000%!
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The stepkids and their kids giving me “looks” or cutting tone of voice when I have taken great care of their parent. I am leaning towards cutting them out if my life (35 years!) when spouse dies from late stage COPD.

But MY parents raised me right so I take a lot of deep breaths, get my sleep and run my couple miles everyday. But very mean of them. Hospital now and home or facility hospice soon.

I am exhausted but I know things could be worse. Thanks for this forum!
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MargaretMcKen May 2025
Nana, it's probably about inheritance. If you died first, they expected to get the lot. Perhaps talk to them about it - at least to say that this behavior makes it more likely that you will indeed cut them out of your life!
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That I'm sitting here writing on a forum bc I can't sleep bc all I do is worry about what's going to happen and no matter what you plan for nothing ever seems to work out.
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Drivingdaisy May 2025
I totally get it casole!!
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Not being taken seriously by my disabled partner’s medical professionals when I ask for help.
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That family will ignore somebody that obviously needs help especially in a situation taking care of another family member. Situations that can turn dangerous. That I'm not well mentally. I'm actually on disability for mental health reasons. And have not been okay way before I took over taking care of my dad. The family knows. I've been hospitalized a few times for trying to hurt myself and once was an actual suicide attempt. I finally had to call APS for help.
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Danielle123 Apr 2025
Wishing you ease, Severin.
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Mine is the feeling of loneliness, cut off from the rest of the world. This is not wed planned for our end of life journey. Friends begin to stop calling, family suddenly don’t want to get involved. I know it’s going to get worse and I can’t stand the thought of it.
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ResentfulWife Jun 2025
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Just one thing? I wouldn't know where to start.
1. Lack of personal freedom, for starters. Sometimes I feel as though I were in prison with a life sentence.
2. Lack of support. Family, friends... vanish in the air like those cheap fragrances you can buy in the supermarket.
3. Lack of acknowlegdement. Forget that. Just forget it.
4. Maybe you are a man like me and, lo and behold, you happen to have a girlfriend. Chances are she won't understand you. At all. But you will have pressure. Take my word for it.
Arguments, arguments, arguments... ad infinitum.
5. Loneliness. My mother, whom I live with, was diagnosed with Alzheimer's 13 years ago. You can explain to her your problems, just for the sake of talking to a human being, and she would start to sing. I kid you not.
6. You are invisible for administration.
7. Being a full time caregiver of a loved one with Alzheimer's is so overwhelming I've had to come to this web being a Spaniard living in Spain. At least I can vent, although not in my mother tongue.
Thanks for that possibility.
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Danielle123 Apr 2025
Besiberri, that is how I used to feel: as though I was in prison with a life sentence.
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That no matter what I do, or how, or when-- my husband will never "get better."
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BarB1936 Apr 2025
Exactly
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When there is seemingly no end in sight and no one wants to address the elephant in the room of: 90 yo mom is content to have us do more and more including having someone with her day and night, giving up our lives so she can stay in her own home. How long can me and my sibling keep doing this? She’s certainly okay with it. She is declining but even so the more we’re there the less she will do for herself. I can’t get my brother to address what ARE we going to do in the long term. To be honest I hope she has to go back in the hospital so we can have options and be forced to make some decisions. I hate not having a game plan but no one wants to talk about long term but me. Any thoughts on how others handled something similar?
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Danielle123 Apr 2025
Waghmg, 94-year old mother used to insist that she would stay in her apartment until she died. It didn’t seem to trouble her that my retirement had essentially gotten derailed, and that I was being held hostage by an aging parent.

I can tell you from experience that nothing will change unless you force the issue. My mother was also declining, and it was becoming clear that she could no longer remain in the apartment. She finally began to realize herself that it was no longer working; however, we had already started the discussion about LTC.

There is nothing wrong with telling her that it is getting to be too much for you, and that you want to restore some balance in your life. You can also tell her that you can’t be there all the time and attend to your own life. It’s the truth. She probably won’t like hearing it because this is working for her: it’s not working for you, though, and it doesn’t have to continue this way.
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My husband was always quite selfish, but now that he has dementia I am just an unappreciated servant. His brothers haven't talked to him in years, our kids are loving but have their own life elsewhere, so it's just us. He has ruined my career by changing jobs and states every time he had a disagreement with a colleague, then left his job at 50 to start a disastrous business in which he squandered his 401K (in addition to playing golf almost daily, and eating out in fancy places with his friends). He stopped contributing to the household because he had to invest in the "business". I have been supporting the family, cooking every night, paying for the kids' tuition, paying off the house, and he accuses me of stealing from him because of course he doesn't remember spending his money. I had to retire to take care of him, and I fear my 401K will all go to his nursing home when I can no longer care for him at home. He is in excellent physical health otherwise, so probably will outlive me, or I will be a burden on my kids. The funny thing, his psychiatrist has reduced his antipsychotic to almost nothing because "larger doses may shorten his life." She doesn't have to deal with him.... Nobody ever asks how I am doing, it's always about him. I am tired! Groan, thanks for letting me vent.
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BurntCaregiver Apr 2025
@AnnaKat

You were able to work, support a family, cook for them every night, and pay all the bills while your husband played golf and squandered money.

Why did you remain married to him for so long? Clearly you didn't need him for anything, so why did you remain in such a miserable situation and more importantly kept your kids in it?

My friend, please see a divorce lawyer. For your sake as well as your kids, don't be a martyr. File for divorce. You won't lose financially. Your 401K will not go towards his nursing home care bill. I don't know if you know this or not, but the rules of Medicaid are very different than the rules of what a nursing home expects. Medicaid is reasonable.

Do not remain married to him though. A divorce lawyer will make a division of marital assets. Then whatever is settled upon is settled. Then your ex-husband gets placed. Then the nursing home gets HIS assets. Not yours.
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I just finished a long trek of primary caregiving with my own Mom. A friend of mine who is dealing with her demanding and selfish 94-year old mother texted me in despair yesterday as her Mom had just fallen—again. My friend is 74, and should be enjoying her retirement in peace. She also is a senior herself, and has her own health-issues. What she dislikes the most is the seeming endlessness of it all: she just wants her own life back again. That is exactly how I felt.
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Hothouseflower Mar 2025
My 96 y/o father with dementia annd colon cancer with no quality of life just survived his second bout of Covid earlier this month. I thought maybe this is going to be the thing that finally takes him. It wasn’t. He just keeps going. I am thankful I can write this here. It helps me get it off my chest. Of course I would never utter this to anyone directly but that is how I feel about his and my situation.

I feel for your friend.
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Being unappreciated, not only by elderly father that I take care of, but also by my siblings that don't help out and just criticize all I do and don't do. I am the one that sold my house, my husband changed jobs just to bring my father back to the family farm. I have managed his care for 12 years, 8 of it in a facility and 4 years on my own. No one understands what we gave up taking care of dad and no one has time to help out. I hire someone to take care of him when I am out of town visiting my adult children. When they do visit, they take things they want, make a list of things he wants them to have, and one sister has convinced him his attorney is a bad attorney and needs to redo his will. I have POA, but it's a constant battle. Sorry, this is so long, it could be longer.
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Danielle123 Mar 2025
It makes you feel even more unappreciated when nobody understands (or wants to understand) what you really gave up to take care of him.
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My BOTHER ISSUE is I am considerate, caring and my spouse has cancer and emphysema. The emphysema is the life sapper.
Why am I complained, nagged at when I am a good caregiver!
Sub-BOTHER is everyone takes his side and tells me he is bored (he is mobile), Won’t let me do his BP or get on the scale (to monitor fluid retention). Even at MY recent check up (we have same young PCP) he asked me about husband! I may be very healthy for my age and caregiving but I have issues.

I accept this is my doing to myself when I should have followed up on divorce business last year. I did hiss this at him back then too.

He is more frail now. Maybe he is trying to drive me away. I will ask (LOUDLY) next time he acts up.

Thanks for this helpful issue!
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My wife and I have had to completely give up on goals we had and turn our lives upside down to care for my mom, who had her whole working life to prepare for retirement and didn’t. save. a. CENT. We wanted to have kids or adopt, but that’s completely out of the question since we have a 77-year-old 1st grader who is unlearning every day. I’m just trying to work through a lot of resentment.
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Danielle123 Mar 2025
I can understand your sense of resentment. You have every reason to feel the way that you do.
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Having to do everything yourself without any help because he refuses anyone but me.
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MargaretMcKen Mar 2025
Please start your own question if you would like helpful comments.
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How depleted I feel after 10 years of caregiving for my 94-year old mother. I know that I have my life back now, and need to get on with it, but am struggling to summon the energy to do that. I am taking daily steps to move forward anyway: I owe it to myself after a decade of what was essentially indentured slavery.
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JanPeck123 May 2025
I wish you the best
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Deadbeat family members. My neighbor's daughter left for a European vacation after her Mom fell and broke her left shoulder and her right hand.

She has to get a shoulder replacement. The neighbors are doing all of her care until her surgery. My boyfriend is spending the night and getting her into and out of bed. Several neighbor women and I will be doing her night before shower and day of shower.

I cannot believe the daughter left to go on her European vacation. Daughter should have sent her husband and the granddaughter on the European vacation and daughter should have routed her ticket to help her Mom.

These people have some financial wherewithal.
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MargaretMcKen Mar 2025
Why tell us what ‘deadbeat’ daughter should have done? Perhaps she’s saved for years for this? Perhaps she’s talked herself blue in the face trying to persuade her mother to move somewhere with appropriate care? Or the fourth holiday to cancel when M had a crisis? Perhaps M is a leach who brags how the neighbors will of course cope with all her problems? Perhaps you really don’t have all the facts and it’s really not your issue?
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That our siblings could careless about her nor do they go visit her in the hospital. She’s been in hospital 2 months 5 Days today!!! She doesn’t understand, she cry’s for them just about everyday.
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Guilt one million percent! My mother never put me first, and now, my reality is putting her first. My daily routine is get ready for work, go to her house for an hour (she lives 40 mins from me), work, home, multiple calls to her. I want to share that my job is providing resources for the community, so the calls I handle are mostly exactly what I go through daily. My brothers are in their 70s and live in another state, so it's just me. One sends money, one does not. I now wake up sad lately, I feel that my cup is full of other peoples stuff. There is no room for me. I am the youngest of three children and my childhood was a mess to stay the least. My mom married multiple times to alcoholics so I endured multiple forms of abuse. Most days I am good, but right now, I am not. I do see a therapist for many reasons and my mom, and my trauma from her decisions are a big part of that. I just feel enormous guilt if I don't go or call. My Mom has arthritis throughout her body and has taken opiates for 15 years. She has ran out twice in the last 6 months and she aims all of her nastiness right at me. If you met her or talked to any of her friends they would not believe she can be like that. My husband said to me the last time that she may not be here next year and would I be okay feeling like I feel. I told him is she continues to treat me like that I don't know how bad I would feel if she wasn't. That's a horrible way to feel about your parent. My Mom is the dealer of guilt and shame in my life and I am the addict. It's a terrible cycle, and I am burnt.
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BurntCaregiver Feb 2025
@Msdaughter

When mom aims all of her nastiness at you, give it right back to her, sister.

I totally believe you about other's thinking your mother is wonderful and could never possibly behave like that to anyone. This is pretty common. My mother is the same way.

Stop going over there every day. Limit the phone calls to one a day. If she starts acting up on the phone, you end that call and let the barrage of calls that will follow go straight to voicemail.

No one has to tolerate abuse. Not you, not me, not anyone.
I know that it's a hard cycle to break. Also a person can become so conditioned that they become addicted to guilt and shame.

People recover from addiction though and you can too. How about letting yourself be worth it. You deserve recovery.
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Yup..we are Invisible! The dementia patient is everyones concern..I hate it all. Love my mom but hate the disease and workload..{mental and physical}. I will never care-give again..I plan to stay single with no partner. Year 7 just started with mom deep in Lewy Body..moms 91 and this may go on until she is 100…I will be 83..that IS forever!
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In my situation, while I was sharing caregiving duties with a sibling - it was dealing with their very dysfunctional relationship they had with each other over the years. With her needing care and him in charge, this put their crazy relationship front and center, and bad family patterns just seemed to multiply - at my expense. It was miserable. She continued to work me like a dog while refusing to ask him for the things she readily asked of me. I'd show up for my few days of caregiving every week, and she just scowled as soon as I got in the door...but then changed her tune to being grateful after my 3 day "shift" was over. Sibling in charge is a raging narcissist, never "allowed" me a break from caregiving (this went on for almost a year, and I was out of state, had to commute to give her care), so I had to put up with his abuse while this went on for a long time. It was THE worst time of my life, and I am filled with anger and resentment over it. Caregiving is hard enough...add in crazy folks who are dsyfunctional with each other? Nightmare. I will never be a caregiver again! I've also taken care of other family members over many, many years, so I am all burnt out and done with caregiving. Sounds awful, but it's true.
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Jada824 Mar 2025
This sounds so familiar
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I was a caregiver for my mom and all got from my siblings that never were there for her was blame and me for everything, blamed because she die after a horrible TBI at 81 with multiple health problems, today is her burial and didn't go just to no see them i feel so betrayed by them 💔
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casole Feb 2025
🫂🫂🫂
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Everything. To be blunt, I despise all of it. I do it out of obligation, guilt, expectation, and trying to “do my fair share” like my siblings. But no matter how I slice it, I am filled with rage and wish I could disappear so people would stop demanding my time and stealing away my own precious life energy. Yes, I love my parents. No, we are not emotionally close and never have been. I do not enjoy spending time with them; I dread it. They both have dementia and a whole slew of other health problems. I want to move away and escape this nightmare existence.
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Hothouseflower Feb 2025
I hope it gets better for you soon. The situation won’t go on forever, it only feels like it.
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I spend a lot of time hating myself.
I just spent a weekend away with friends and I felt like me. I was free and didn’t have to have endless arguing about: why a shirt had to be changed, a shower scheduled for Monday/Wednesday/Friday, or why “these people,” (it’s really me, but I’m now often just, “these people,” to my husband), are always scheduling physical therapy, doctor appointments, and other things, and are “never telling anyone ahead of time.”
I feel like a terrible person most of the time. I’m 73 and nearly died last year, but when I was sick my husband was still overly concerned that he wanted food, felt cold, didn’t think he needed a shower or a change of clothes, and didn’t want to have his life disrupted. For the most part my husband didn’t seem to even notice that I’d become ill as I lost the ability to walk, stand, lie down comfortably, and even breathe.
I’m an old lady that only has caregiving ahead of me. this has gone on long enough that I no longer have any patience left. we built back a lot of cognitive skills after each of three strokes, and now it’s Alzheimer’s and there’s no building back.
I don’t want any more of this. I plan and organize, thinking I can come up with a plan that’ll make this easier, but it never seems to get any better. It’s like I’m the world’s worst wife and caregiver, but there is no way to improve and I can’t just walk off the job. No amount of reading and figuring everything out really fixes anything.
I know nothing is his fault and each day when I grow impatient and lose my temper, it’s just my fault. He can’t help anything, and I seem to be getting nothing right. The hardest part for me is that I feel incompetent, but I can’t walk off the job and look to see if someone else will hire me for a different job. I’m tired of being a terrible person.
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Makeadifference Mar 2025
You are not a terrible person. You just cannot do this all by yourself.

I urge you to really focus on you and take care of yourself.

what about putting your husband in Assisted Living or Memory Care? If you cannot afford that find a good social worker at the nearest hospital where you live and they would be able to assist you with Medicaid and placing him in a nursing home.

i realize what I said is not the easiest thing to do, in fact it is extremely emotional because he is your husband.

But what worries me is I feel like you are slowly killing yourself with all of the stress.

Please love yourself and know their are options out there.

Call the Alzheimer’s Foundation phone number at 1-800-272-3900. It is a 24/7 help line.

The best of luck to you.

D.
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Never a break. Increasing hypochondria. "ALL ABOUT HER" is correct. My charge even told her doctor (after experiencing some hoarseness) "I need some attention." She wants everyone to wait on her and entertain her. Tells me it's "easier for you to do".
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BurntCaregiver Feb 2025
@Daisy9

My mother is the way you describe. The "ALL ABOUT HER" no matter what's going on and the hypochondria. She was always like this since I was a little kid.

Her go-to for not doing anything for herself was the it's "easier for you to do" nonsense. She dropped this when my response to her stared to be, "What would actually be the EASIEST for everyone is if you were put in a nursing home". Then she's have to get what she wanted for herself.

Yes, it would be easier for her to be waited on hand and foot, but not happening. A person MUST do for themselves where are able even if it would be easier for them to have someone else do something. Easier doesn't always mean right though. I was a caregiver for 25 years as my employment, I won't rob a senior or handicapped person of what independence they have. When they're waited on hand and foot and there's zero accountability for their behavior, this is exactly what happens. They lose whatever independence they have. Their self-respect and self-esteem goes with it. Most of the time the person isn't going to like it and they will be angry at you. Ignore that. Caregiving is not easy work. It's not easy when it's family or when it's employment and often the caregiver has to be the 'bad guy' to do what's right for a person.

Never do for a person what they can do for themselves. If they need help, you help them. If you have to do it for them because they can't, that's different.

Never cater to or humor fussiness, orneriness, rudeness, or learned helplessness. Your mother (like mine) must be made to understand that you will not be her social life and no one is going to entertain her. She can go to the senior center or adult daycare for entertainment. There can be a hired companion (that she pays for) who will take her out if she's able to still go out. She can go into AL or LTC. They always have entertainments going on. Otherwise, her life can be what my mother's is which is watching cable news all day long and panicking about it. She really doesn't try to instigate fights with her aides because she knows her choices are make it work with homecare of it's a nursing home.
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