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I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......

Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?

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My wife and I are dealing with taking care of my mom and hers. My brother and I take turns staying with mom, but I am stuck here 3 weeks to his 1. He/his wife push we have responsibility BS. I return home to my home to find my MIL who lives with us. All her other sons and daughters also pushing the no time BS.
We know what is going on and I now really hate them and their BS excuses.
They all live within 2hrs at most.
I worked +40 years to build a good retirement and now it is spent babysitting two old ladies. Knowing that we are wasting every good day of health doing this. We are both trapped and knowing this only ends when someone passes.
Cannot plan to do/go anywhere without begging one of these morons to take care of their own mom for a couple of days. My fantasy now is for the wife and I to take our passports and just escape this prison.
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Hothouseflower 8 hours ago
You need to take control of your situation. Your family and your wife’s are not going to do more than they are now.

its time for you to not to stay at your mother’s for three weeks and for you to tell in laws that you are no longer able to have your mother live there.

If these folks have money put them in facilities. Otherwise apply for Medicaid and get them in a SNF.

All I know is I started my slog in 2020 with my parents. It just ended last month finally. All this sacrifice for my two largely unappreciative parents.

You are right about all those healthy days going down the drain. I was so jealous of my friends whose parents did not linger in lousy health like mine did.
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The fact that no other family members are will to put in any REAL help. Split up time where she could stay with her, and/or have her stay with them.
Sharing the BURDEN!
As such I am now trapped babysitting an elderly person, knowing that each passing day, is another healthy day I will never get back.
Resenting each and every person who is unwilling to make any sacrifice for their own mother. Also learning who these people really are and resenting them for this.
Knowing that this will never end until she or I pass.
40 yrs of working to build a retirement and this is it?
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The rapid pace of decline.

I took on a 4 hour a week volunteer gig sitting for a friend with alzheimers in mid 2025. Her husband works a factory job for 4 hours every morning.

After the first day I realized she could get out. We had a wonderful 6 months of visiting our art museum 3 times, visiting our historic museum and the 2000 year old native american canoe, visiting the art guild and talking to artists, visiting our local African American museum and talking to the local elder (we are white), and visiting our city hall art museum and our city hall Christmas decorations. We also went to our local market to pick up acre peas and ham hocks.

Her husband requested that we stay home during 2026 so I respected his wishes but we spent a lot of time in her garden and she gave me some plants.

She just broke her ankle and foot and it was a really bad break. She is in the hospital now. I don't think she will ever be coming home. She does not understand that she cannot walk on the cast.

I understand the husband's decision as there were a number of elopements in the car and having to call the Sheriff's department. She would also wake in the middle of the night with anger which was tough for the husband to deal with. The mental health professional that lives in his neighborhood told him to back down from a situation when she is angry so the husband started sleeping in his shed work/shop if she woke angry in the middle of the night.

I'm just sad about the pace of the decline.

On the plus side I got more out of volunteering than they. I was really beaten down from dealing with my sister over my mother's death and estate. My volunteer gig got me back to living.
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Hope21 Jul 16, 2026
Brandee,
Your friend and her husband were truly blessed to have your friendship and care. Thank you for an inspiring account!
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I was dumped into a caregiving situation once my father abandoned the home. First, it was my mother who fought a brief battle with pancreatic cancer leaving behind a severely disabled adult child. What got to me was the ongoing stubbornness of my younger sibling bypassing the toilet and using the floor to void and defecate. I would be awakened out of my sleep in the middle of the night and having to clean up bowel movements and change sheets. I would have to be up at five am to pack lunch and get my daughter ready for school. Later after a full time job as a Nursing Staffing Coordinator, a commute back home to fix dinner and back out for evening classes.
This craziness went on for three years. Finally, I had my sister placed. None of my other siblings had no idea how she ended up in a brand new group home and dad never shared this information with any of them because he was busy painting me as a villain.
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Probably that I was thrust into this role that I never signed up for, for someone who is unable to appreciate it, and I feel like I'm sacrificing what was supposed to be the best years of my life. :(
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BurntCaregiver Jul 16, 2026
@LilacGirl

So many of us have been in the same situation as you. I want to tell you something I have told countless family caregivers over the years.

Caregiving only works if it's done on the caregiver's terms. Not the care recipient's.

You're clearly not the one setting the terms here and you need to be. For many caregivers the person they care for is just too unreasonable, stubborn, nasty, and needs a level of care that can't be provided at home. This is when they need to be put into facility care.

Your life is important. You also matter. Many people get guilted into caregiving positions because there's a lot of judgment from others when someone is a family caregiver. Often when a person doesn't allow their entire life to be consumed by a family member's care needs there will be judgment from others. Often there will be from the LO they're a caregiver to. Ignore it. You are allowed to set boundaries and put limits on how much caregiving you will do and for how long. No one has to completely give up their lives, jobs, homes, marriages, friends for caregiving to prove they love their family. This isn't love. It's care slavery.
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The bowel movements. I read quite a few of these, and I think people are being polite, or they are not 24/7 caregivers, because the stench and cleanup are so gross. I wake up dreading it every day.

Also, not having left the house in three years. Psychologists say this type of isolation causes permanent damage. Even in jail, people can't be locked in solitary for three years. I often dream of the luxury of being in prison. I would only be responsible for myself. I would have friends. I would get out in the sun for an hour a day. Someone would do my laundry and cook my meals.

I'm very jealous of everyone who complains about being angry with their family for not helping more. They have family. They have people who help some, even if it's not enough. I have nowhere to put my anger. I've learned to be numb.

But I love my mom, and that keeps me going. I am giving her the best life she can have. She was in rehab for three weeks a while back, and she hated it. I spoil her, and I love spoiling her.
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BurntCaregiver Jul 16, 2026
@LoneRanger

You're not lying about the BM's. I cleaned them up for 25 years. Many times I've had to vomit because it's so gross. Wearing disposable face masks with a few drops of lavender oil or citrus on them will help a bit.

I hope you have some outside help coming in because you need breaks too. Caregiver burnout is real.
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Love when this thread pops so I can complain lol. Sooooo tired of the monitoring of the temperature.... is it too hot, is it too cold. Is the heat working, is the AC working. Should we turn the AC on? Mom actually said "I hope we made the right decision " when we turned the AC on... like it's life or death. Summer's here, but also it's almost over etc etc etc etc ad nauseum.

Knowing every detail of their lives at every moment, particularly bowel habits, who's gone, who's going, who can't go, who's going too much.

Also the bills....the mail coming is a nightmare. Are the bills paid. Do we have enough. And the medicine, are we going to run out, are the prescriptions ready, will the doctor remember to send it, is it ready, etc etc. It's constant anxiety and ruminating. I'm so envious of people who actually get to separate from their parents and recover from all the nervous dysregulation..

It's comical until it's not. Stay strong out there soldiers!
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lkdrymom Jul 5, 2026
Your post reminds me of both my father and husband. My father’s favorite topic of conversation was wondering what type of cancer he was going to have. My mom died of cancer. My father never had cancer. Then his favorite subject turned to his bowel movements. I suddenly missed the cancer talks. My husband is 18 years older and not suffering from anything other than getting older. However he acts like your mother where simple decisions hold weight as if they were life or death. A new recipe doesn’t come out as good as expected and he acts like it is the end of the world. Simple decisions he wants to leave to me because he just can’t be wrong.
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It is the constant rationalization why something to do is forgotten or for any other reason. I love him dearly--he is my beloved after a first sight egagement 63 years ago and a happy life together with a rich family live besides. He has dementia/ahlzeimers.
I am his mind, he is my body as I am the physically frail one.
He will not leave to go into a facility (I would move with him)...he is 88 and I am 84.
We do have an aide twice a week but soon we will need more help. Our long term care insurance not helping much as he is in good physical health and I don't
have dementia.
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I am sick of everything to do with food. I'm sick of coming up with things to make him. I am sick of coming here for my stay (take turns staying with him with my siblings) and not knowing what food we are out of. I bought one of those dry erase boards and stuck it on the fridge and said if you use up something or if something is running low write it on here. I'm sick of the freezer always being full of bull**** that no one will ever use and not having the room to put any foods I bring over. Same with the fridge. I suggested we label what is in there with what it is and the date that it was made. Nope. So it is a guessing game. I'm sick of finishing with one meal and doing the dishes and then it seems like it is time for the next meal in two seconds. And an appetite seems to be the only thing that my dementia father hasn't lost. Ok, that is my gripe for today.
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I love my mother and always will. But at this time, I don’t like her. She loves everyone but me. I try so hard to make her happy. It’s never enough. Reasoning with her is not possible. One word can set her off. I try to remove myself to another room. She talks to me anyway she wants to. No regrets ever. She does not like to be alone but that is going to happen once I find a place and move. I just don’t care. I feel beaten down.
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The lack of give a shi! By everyone else involved. They don't care if I'm never able to go to school functions with my grandchildren, if my back is broke or my head is pounding or if I have money to buy my loved ones present since I'm without income taking care of Mom. They don't care that every morning I wake crying due to the impossible amount of chores I have to do before the end of the day. They pile in once a month to make themselves look and feel better. I've grown to detest them
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MerryWll10 Jul 6, 2026
This! I feel every word you stated.Well said. 😞
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Truth.. my biggest boogaboo that I experience while caring for my vascular dementia diagnosed spouse is, I miss sharing our formerly prearranged travel experiences, our former ability to work for pay for beer money so to speak, our former Intimate moments, etc ... We have both had to find ways to grieve our former lifestyle and come to accept that our life together today is different and I have had to focus on new found ways to find our joy, usually one sided, wherever and however we can. For instance, on this beautiful Sunday morning, I'd much rather be taking a ride down to the ocean. However, seeking to limit activity for my spouse, which keeps him calm and content, we are sitting on our porch. As we sit here I meditate and dream of the ocean smell the water feel the wind in my hair, and the sun on my face, the sand on my feet, seagulls in the sky, and there we are sitting in the sand watching the ocean in and out and feeling calm thanking God for the blessing it was beautiful Sunday morning. So what I'm trying to say is.. make the most with your loved one when you can. Laugh about the confusions they have. Make jokes. Be tender. And most importantly reach out for the joy when your loved one speaks or doesn't, look into their eyes deep into their souls and see the higher power that's inside of all of us it is reaching for joy as best as possible each day, no they are safe, in your love, and caring, what life is left and do with it the day brings. It's the best advice I can give us a call for maintaining our mental health through the most trying times of our lives watching our loved ones go through these hard times.
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bkgranny Jun 27, 2026
I try those things too because I am very grateful to still have him as he is my beloved. I have not been to church in 2 1/2 years because I can't trust him to not drive, use a chain saw or get up on a ladder while I am gone.
He is a "showtimer" for sure when we are at a medical office.
I am used to being shadowed as at least I know where he is and he truly is a helper in the kitchen and still neat and tidy.
Our best times are Sunday nights when the family (those still in town) come for Sunday dinner and he is engaged in conversation on the deck and at the dining room table.
Luckily he enoys water walking at our Y and the library events for seniors and walking our 1/2 mile neighborhood oval every day.
I am grateful we have what we have for now.
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I am a caregiver for my 68 yr old husband with vascular dementia. I am bored and stressed from the constant watching for his well being and having not much stimulating to do. I have been posting on social media some good encouraging Bible texts, and sayings of encouragement which helps me up to a point.
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For me, is the burnout of day in day out care for 6 years which has consumed my life. Although I have help with caregivers, I am managing them as well and it is a lot when dealing with my own health issues.

And trying to be really in the zone of being present, calm, loving and patient with my mom who has Lewy Body Dementia when I am with her.
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Over 2 yrs ago I moved in with my 80 yr old sister to take care of her. Cleaned up her finances by giving her mine . Now when I say she needs assisted living I’m told by other sister and nephew that I’m exaggerating her symptoms so I can do that. I’m 75 and am am down on hands & knees cleaning her up and dressing her. I’m so angry and hurt. Also exhausted.
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LovingHeart26 Apr 13, 2026
Dear Joyce, you are a true angel and I wish I could wave a wand and bring in support for YOU that you so dearly need. God bless you and sending you a big hug. 🌸
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My biggest problem is not being able to understand my wife when she talks. The first two or three words I get, but after that it is all jabber. I ask her over and over but its still the same. Second thing is her always trying to get out of the house, I am sick of locking and unlocking theses door.
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What bothers me the most has to do with my brother and how Mom claims she treats us 'fairly' and 'equally' (and is quite proud of it). How is it fair to give both children 'the same' everything when one child does it all (me) and the other child does nothing (brother)? She gives us both the same Xmas gift every year, the same praise to friends and family. I'll do 100% of ____ (fill in the blank) and mom will say "my kids take such good care of me". Her 'kidS' / plural?? I moved my entire life on my dime and my time to live near her to help care for her. My brother has shown NONE of this consideration (in time, money or care) our entire lives, yet mom 'rewards' him and we're lumped into the same category. If it were up to him he'd just stick her in a home (on her dime) and forget about her. I am the one helping her on the daily so she can stay where she wants to be (her home). Yet, mom treats both her kids 'the same'. She constantly makes excuses for him about why he's not around. "He has a career" (Um, so do I, with a bigger more demanding job than his). "He has a family" (Um, so do I). I could go on with the examples. Can't she see where her bread is buttered and act accordingly?? When she passes, brother will be the first in line wanting 'his half' of whatever little is left, and mom has it set up so it's all 50/50 because she believes it's the 'fair' thing to do and she 'treats her kids equally'. I'll never understand this. For those who will say to me 'you'll never change her or him', believe me, I already know that. It doesn't mean I don't deserve to have feelings about it. I sympathize with everyone else in a similar situation...
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Hothouseflower Mar 26, 2026
So sorry that your mother is clueless and ungrateful.

You should examine your motives as to why you are making such an extraordinary sacrifice and make some changes if you are unhappy with the situation as it stands.

It is not fair that the expectation for caregiving falls to the daughters. The sons usually get a free pass. The days of women not working outside the home is over, and it sounds like your mother as with many in her generation don't see that.

If your mother is not paying you a stipend for your hard work, you should ask her to do so. You should get some financial compensation for your many sacrifices.
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My husband and I are the main caregivers for my 94 year old dad. My dad was emotionally and mentally abusive to me and my sister as we were growing up and in our teenage and early adult years. My sister and brother do nothing to help care for him. My mom died in September of 2020. He moved in with us and I really regret that decision. I’m 72, and have health issues which I think might be stress related. We have not had any major down time or respite from him. I’m resentful, exhausted, anxious and depressed. I pray every single day that he will pass and be with my mom in heaven. He is failing gradually. Sleeps almost all day. His balance is bad. He has no appetite. I’m getting to the point where I mentally and physically can’t and don’t want to care for him any longer. This may sound selfish, so to others out there, please don’t judge. All our situations are different. I just wanted to vent about mine.
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DaughterDoesAll Mar 26, 2026
I don't judge you and if I were you I'd feel the exact same way! I feel bad for you, having said yes to something so long ago and now you're still strapped with the responsibility of it all. Your feelings are NOT selfish. If anything you've been way too generous for way too long, while your siblings get a free pass. It's time for you to have the free pass too, even though you've already paid an enormous price. Time to have someone else care for Dad. Sacrificing your own health and happiness is NOT worth it. Easier said than done, I know, but it's really time...
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The one that, at least so far, gets to me the most is the shadowing. I cannot get up to throw something in the garbage without my wife getting up, even as I start to stand up, and follow me to the garbage can. Brush my teeth, even when I had a cold to follow me to blow my nose. Seems minor compared to many others and I am sure it will get worse, but that is the one that gets me the most.
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Yesterdayanurse May 7, 2026
Or they ask “where are you going?” Or “what are you doing?” Shadowing is tough to deal with. I feel smothered.
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The open-ended timeline. She came to us on hospice with 6 months. We are in the 3rd year of bedbound care in our home. Her care team is more than 10 people deep, including us, the hospice team and hired caregivers. Whew, mercy.
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LovingHeart26 Apr 13, 2026
Yes! Same here. Going on six years and it is hard to move forward with your own life when you are holding space and energy for another. It is quite difficult having so many people in your home no matter how wonderful and important they all are, and how grateful you are they are there to help. God bless you 🙏🏻💗
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It's the overwhelming, crushing wave of responsibilities that never end while caring for my husband who has experienced two cancers, colitis, radiation, two broken ribs, a fractured shoulder and fractured hip. We were married only two years when all of these medical issues and emergencies began. Our seventh anniversary is next month. Right now he's in a wheelchair and uses a hemi walker, and needs assistance with toileting, bathing, dressing and Rx administration. He has mild cognitive decline at 78 but is smart enough to treat everyone around him like a friend and treats me like an employee. My husband has abdicated all responsibility to me and watches western movies all day, waits for his meals to magically arrive on the table, calls loudly when he wants something and he can't get in or out of the bed without me. He weighs 200 lbs. and I weigh 124 lbs. so the strain on me physically is showing in my back, hands and elbow as I try to shift, lift and assist his body as he has Parkinson's disease also. I love my husband very much but I miss the man I married who was so sweet, kind, gentle, fun and full of life. I now have health aides five days a week for three hours each day because I recognized that I was worth time to myself. I need this help for my sanity and soul. I also keep my friends close, exercise by walking my dog four times a day and have a Christian counselor. Without a deep and personal relationship with the Lord I don't know where I would be today. My prayer today is for strength, peace and joy for all care partners. :)
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MargaretMcKen Mar 11, 2026
Reread what you wrote, and think again. The man you married was “sweet, kind, gentle, fun and full of life”. The same man now “treats me like an employee”, “has abdicated all responsibility to me”, “watches western movies all day, waits for his meals to magically arrive on the table, and calls loudly when he wants something”. Not only that, he is nearly twice your weight and dealing with him is dangerous for your health and safety. This behavior change is not justified as the result of “mild cognitive decline”.

Would you have married him if he acted like this originally? How old are you? He is 78, and this could go on for at least 15 years. Don’t let your Christian values lead to ruining the remainder of your life. They put obligations on him too.
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Having to clean up nasty, poopy diapers and doing fecal disimpactions because Mom doesn’t remember how to bear down and push out a BM. So disgusting and not a job you can hand over to any one else because you nrver know when she’ll have a dump. She also fusses about me wiping her to clean her up.
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Kidd12 Apr 12, 2026
I'm sorry that YOU are the one doing this deed... just do your best and keep her hands away...use warm cloths or wipes... let her fuss just be quiet and finish the job...and give a cloth to wipe her hands while you try to finish...if you could get help by talking to her and wiping her hands...it's almost like a game but fast moving...if she is bad, give her a shower... good luck 🤞
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Heather Ann, the money is probably worth seeing a lawyer about. If you ‘paid all the mortgage installments’, then it might be possible to get them designated as a loan to your parents, who would otherwise have needed to pay themselves. It may need your mother’s agreement, but you have a lot of leverage for her to agree. Debt to you may be much cheaper than trying to transfer the title. It’s worth a first lawyer visit, anyway. Take the bank records with you.
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Heather Ann ,
No guilt . You did not make your mother old. You have nothing to feel guilty about . Also you said “ Mostly you hate the crying “. Who is crying ? You , your mother , or both ? .
Talk to the doctor about possibly a mild antidepressants for one or both of you ??
Also can you get some respite somehow ? Are you able to leave the house and do something for you ?
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HeatherAnn Feb 21, 2026
I wish I could get an antidepressant for her. She started seeing things and altho she has Macular Degeneration and gets eye injections ~which I BELIEVE is what's making her see things~ her neuro thinks it's actual hallucinations, so she's been having me wean her OFF her antidepressant, which is Sertraline. She's gone from 200mg to 1/4 of a 100mg, (25mg) but was having withdrawals so Dr bumped her from 25mg to 50mg. She cries at EVERYTHING. Also, she's always begging me to give her things to do and I try but she can't SEE anymore, at least not enough to read, but it seems like the things I do come up with turn out to be too difficult and then she cries. I try to soothe and hug, telling her the yarn-winder at the factory is at fault, not her, when she can't ball up a skein. I soothe and soothe, saying it's the Macular Degen that's making her see people walking around in the woods. YES I still harbor resentments (don't we all?) but I know she can't help it and I try so hard to treat her as I'd want to be treated if I were in her place. I'm just at my wits end, I don't get any soothing, I get no breaks, she will NOT allow anyone else other than me to do ANYTHING. Which brings me to my other issue: when I AM gone, taking other family members to places THEY need to go, she drives my husband and daughter cray-cray by asking constantly where I am, when I'll be back, even tho I put where I'm going, what time I leave and when I'll be back up on a huge whiteboard. "Up my butt" has a whole new meaning at my house!! I'm an only child, just so y'all know, there's nobody but me to take care of her. She is not on Medicaid cuz of her pension and SS, but we can't afford help even if she WOULD allow it. If I try to put her in AL, my family and I will lose our house because her name is the only one on the deed (she and my late father got the loan but I paid all of the mortgage payments and the bank has clear record of that but it doesn't matter)and it'll cost over $1000 to put me on the deed or put it fully in my name. Plus, Medicaid goes back five years so even if I DID try to go that route, we'd lose our home ANYWAY.
Some days I just wish I'd just go ahead and go insane so I could think about rainbows and unicorns instead! 🫠
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Heather Ann, You sound like a pretty awesome daughter. Please don’t feel any guilt. You are doing the best you can. .

Sending a hug.
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I'm caring for my mother, who one Dr said she does NOT have dementia but was so very, very wrong. She's 92, lives with me and my family and I will admit I hate just about everything to do with this. First I'm the daughter, I don't do anything right. Next she's crying all over the place because she can't ball up a skein of yarn and I'm expected to swoop in and make it all better. Mostly I hate the crying. And I hate the guilt, guilt, GUILT!
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I'm not my Mil's caregiver, she is adamant that I am not allowed to care for her. Yet, she resides in our home until we can get her relocated to AL. She doesn't see me as "authoritative" as in directing her to shower, wash her clothes, etc. I take her to doctors appointments and nail salon etc. I'm actually physically retired from caregiving after 17 years.
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For me, it was not being able to make people better No matter how much my heart was in it
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Hope21 Feb 12, 2026
I agree. I would also add that it hurts that I cannot make my dad “happy”, or even content. But since I am not divine, and in view of the multiple losses of loved ones and of his own health and independence, I understand. But it is sad and hard.
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That very few people understand what we as caregivers go through on a daily basis.
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Freyasmom24 Feb 22, 2026
My dad loves to say to me "you're just a caregiver" and not actually knowing what a caregiver does. He thinks it's like being a housekeeper....my mom's oncologist explained exactly what it was that I do. I'll probably die of old age before he apologizes to me.
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The one thing that bothers me is the feeling of isolation. Have been caregiving for my wife with severe dementia now for 8 years and it has progressed now to a point where she is on a wait list for Long term Care. Incontinence, delirium, night wandering, aggression at times, absolutely no meaningful communication are all bothersome but the worst is the feeling of isolation and lonliness. Care worker comes by twice a week for an hour to give her a sponge bath but they are in and out quickly. I can't get out so spend days with daily laundry of her bedding and cleaning the house etc. Really, it's the lonliness that's the worst.
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HeatherAnn Mar 1, 2026
I feel your pain SO MUCH. Although I'll never say I know what you're going thru, I sympathize so much! I feel guilty for complaining about my own lot in life after hearing your story.
Part of me wonders if this is nature's way of making the final separation easier, somehow. Like how teenagers make parents so cray-cray that they're GLAD to ship 'em off to college, making the pain of THAT loss a little easier. Maybe?
As my son used to say, "How about NOT?" 😺. Keep your head up, you're not REALLY alone, we're all here for you, as you are for us.
~HB
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