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My back hurts and I can't get a break long enough for it to heal. Also, changing poop briefs. It's so disgusting to me, but my dad is on hospice at home so it falls on me to do it regularly.
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I'm so tired.
Tried to get respite care-they couldn't take my husband-a case of COVID had popped up. Maybe in a couple of weeks can try again.
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Ahhhh 🥺
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I cannot relate how family can be so blind , case in point my MIL needs a wheel chair , she can hardly walk we purchased one for her refuses to use it but doesn’t have a problem expecting everyone to jump up to help her as uses a cane and you have to walk her everywhere hanging on your arm she is a heavy lady my shoulder almost got dislocated after a while I told everyone my arm is hurting what irks me is how stubborn she is and how can you put so much burden on people ??? If it was up to me she wouldn’t get away with it and it seems all the nice people die early the ones that stay make your life a living hell sorry not sorry
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i totally agree with how you are treated. My husband has esophageal cancer and has had radiation and chemo but issues arose and he lost so much weight that he lost his mobility to walk. He is on the mend but he is constantly having me do things for him and it feels like he is ordering me and not talking as a spouse. I do understand that he is sick but I am doing the best I can but he is never satisfied.
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ventingisback Aug 2023
(((Hug)))

He should be giving you huge hugs every day.
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Oh that sounds so familiar with my dad. He is only worried about himself!! Ugh!

I guess the hardest part for me is trying to help my dad while he screams at me then I end up screaming back and walking away because even though he has dementia he has always yelled since I was a kid and I think that it just triggers me. He is the only person who can get me so upset. Then I feel like a horrible person. This process repeats over and over and over...
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Hothouseflower Aug 2023
My mother was screaming because I couldn’t find something she wanted on Monday. Told her don’t start it mom, it won’t end well for you. I refuse take her abusive bullying anymore. Finally grew a spine, it took almost 70 years. But I did.
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The care giving part
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Lovemom1941 Sep 2023
Same for me! I am not a caregiver and I never intended to be. I had it dumped on me with a few days’ notice. I love my mother and want her to be well cared for. I do not have the patience for it.

That, and the poop, I cannot handle the 💩 that gets smeared all over the place. We actually have to remove the toilet seat and pressure wash it because it was so bad. Hubby wanted to trash it and buy a new one but it’s the third one we’ve had to buy in a year! She would just plop down instead of sitting on the toilet and break the seat. The one we pressure washed was 2 weeks old. PT tried to work with her and she was able to sit correctly but as soon as they left, the plopping would be back.
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You’re welcome, venting.
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Reply to NeedHelpWithMom
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That I can’t turn my brain off. Even when you want to take a break, your brain still worries, thinks about the elderly LO, because the reality is that very often a new problem pops up.

I remember reading a poster who said they hadn’t had a mental break (total relaxation, no worries) in years. Maybe me, too.
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NeedHelpWithMom Aug 2023
Caregiving is stressful, venting. It’s hard not to become overwhelmed. Still, please make time for yourself to find joy in your life.

Endless worrying isn’t good for you. My blood pressure was out of control when I was caregiving. I had to find ways to reduce my anxiety.
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Being erased. Not her fault, just a fact.
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Isthisrealyreal Aug 2023
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The thing that bugs me the most is that I have to almost drag things out of people who are supposed to know, who are "experts" on Alzheimer's/dementia. I have been doing this for my DH for 6 years now. I've read anything and everything I can get my hands on and almost none of it pertains to us!

I have recently decided to "place him" in memory care as I am about as overwhelmed as a girl can get. This is not like calling for a hotel reservation! You, and your Loved One, must be approved! So far I've had 2 turn-downs because my husband is deemed "disruptive and somewhat violent". Please...... He's a guy, he's afraid, he's unsure of everything, he's not able to comprehend conversation, he relies on me for everything. They arrive, sit on our sofa, ask me questions about him. He roams around our house because, after all, it's his house! He walks past them and they are scared out of their wits! What's up with that? So at one of these, he erupts when he's suddenly approached, fight or flight response is just natural, at least in my thinking. So he's deemed violent, but out of that encounter I find out about a calming drug. In the last few months this has changed our life, he's happier, I am able to think again! Why isn't this drug talked about and suggested by caregiver's, doctors, anybody? It could have saved us a long time ago!

And so, I keep on keeping on. But he has to go somewhere else, I need to find someone who's willing. I don't need help from national "find a place" people, I just need someone at a current facility to care enough to take him in the space he's in now. Just care for him like I do, listen, watch, help when needed and let him be in his new world.

My heart goes out to all of you here, I know what you're going thru, I have either been there already or am going along with you into new more horrible areas. We're all going to lose our patients eventually, just hopefully before our own lives are over. Thanks to the Forum for letting me vent a little, this is the thing at the moment that bothers me the most. Give your patients a little space and take them for what they are. Think how you would like to be treated, imagine not knowing what anything is anymore. Imagine someone having to wipe your butt, having to try to eat without knowing what it is, imagine listening to people talk to you in a foreign language all day long! It's hell for them, too, not just us.
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Rosses003 Aug 2023
HisBestFriend, I send a hug from my heart. What a genuinely loving, emphatic and human comment.
You know, many times when I come to this place (this website) I do it out of true despair and only find comments filled with anger, resentment, and “I need my life back” statements because of the situations they are living. All of which is understandable, however! we, all of us, specially those whose life became handicapped in some way, shape or form, are deserving of some degree of understanding! even sympathy. The way you describe the new world your husband lives in is so kind, you try to walk in his shoes. You try to be and are his best friend indeed.

I care for my mother, and like you I just NEED, desperately, someone that with human kindness did what I do, be with her, make her feel included (she lost her hearing and has tinnitus among hundreds of other ailments. But the lack of hearing completely isolates her); Why is is so difficult for a caregiver to find conscious help! Why do we end up being the ENTIRE WORLD for one person…and the entire world cannot take a break because there is no one that can take over!

I understand you. I feel for you. We both are there, have been there or will be there.
Just know someone else with a similar mindset is living the same situation. Thank you for that message that obviously talks about tiredness and frustration, but also about understanding and love!
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The oxygen getting sucked out of my home and my life.
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VegasGuy Aug 2023
Yep. Everything stops.
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Everything. And I find my situation very unfair. I never asked for this to be dumped on me.
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Mmlyssa1 Feb 13, 2024
Same
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I am so sorry, Linda.

My mother lived in our home for 14 years. Towards the end, I was burning out too. I understand how you feel.

Caregiving full time is very challenging, stressful, difficult and exhausting!
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Reply to NeedHelpWithMom
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My mom wants to be waited on hand and foot. She has terrible bouts of diarrhea and messes on herself. She rinses her clothes out in the bathtub and hangs them to dry instead of telling me and letting me put them in the wash. She keeps telling me she is showering but there is never a towel and her hair always looks dirty, its to the point I have to tell her if she wants to go somewhere she has to shower first. She can still get around with a cane but she is very slow and refuses to be put in a wheelchair. I am burnt out, I cry, sad, we have had to miss my husbands family reunion, our yearly trip to Florida because she doesn’t want to go to Florida. Its what she wants to do or we do nothing. I have 2 sisters and 2 brothers and none want to take a turn to give me a break. My husband is a big helper, he does what he can for her, he takes care of her banking and her doctor appointments. I couldn’t do this without him. Our grandsons will not visit because she “ weirds them out” whatever that means, they live an hour away and I haven’t seen them since February. Mom told me yesterday back in her day when you got old your kids automatically take you in. I want my life back, I am in my 60’s my husband is 70 and we deserve to enjoy what time we have left. I hope I don’t sound selfish but after she passes we may be to old to enjoy the things we want to do.
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Hothouseflower Aug 2023
That’s too bad. Maybe you should encourage your husband to go to his family reunion without you, He’s probably very disappointed .
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No freedom!
My DH needs 24/7 care due to brittle diabetes, incontinence, bleeding wounds, heart attacks and falling risks from a traumatic brain injury.
We have wound care, PT & OT 2x weekly which are invaluable. But I need to get away, alone, for at least a week after 19 months of full time care following his brain injury and surgery.
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It all depends on the day. as of today is the repeated over and over and over questions with the same answers (ughhhh). The loss of my personal life 2nd. The financial drain 3rd. And now the new twist the rebellion and aggression towards me 4th.
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its a roller coaster and very demanding and depressing job. I feel sad that my life is so different. Thought retirement would be our golden years, and along came Parkinsons. I love my husband and he sure didnt ask for it but the job is endless. Managing house, shpping, cooking , finances, meds, endless dr visits and appointments-its overwhelming . Even with help i feel like i live in a “nursing home”. Hes a fall risk and so has to be watched and constantly reminded to “not back up”
has had fractures, utis, numrrous cuts and scrapes - didnt mention the loss of friends because of limited mobility
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ventingisback Jul 2023
I understand you. It’s also unfair, because in the majority of cases it’s the wife helping her husband (because he’s older, so he got sick first). I’m guessing your husband is older? And by the time you need help, it’s not sure who will be around.

This happens to many women.
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84 y o Mom makes poor financial decisions and had to sell her house (to a friend, she's still living in it/paying him rent.) She has enough money to buy a new smaller place but wants a unicorn: One story, no stairs, garage, but a condo/townhouse so they'll pay for roof and maintenance, within a few miles of her old place but close to medical facilities.

This doesn't exist. She calls me every day wanting to talk it to death for hours but I can't wave a wand and make her perfect living situation happen. I can't seem to get her to realize she'll have to let go of at least one of these "wish List" items. Anybody have an elderly parent in a place without a garage? How's it going? We live in the mid-South so storms are more of a concern than cold weather.
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BarbBrooklyn Jul 2023
Find your mom a real estate agent. They do this for a living. Not your job.
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LightnLife - by saying you're making it work, you mean it works for mom, but it seems to me it doesn't work for you/spouse/children. In any case, glad you come to vent. We all need to do that sometimes.
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Reading again, answering again after nearly 2 years of care for my mom. What bothers me most is the separation from my husband and all my kids. We are living in two different states and making it work. I'm not looking for sympathy. We chose to make things work after a full family move became impossible either way. It is bothering me the most right now. I am grateful for the space to say it. It feels good to put it out there. That is all.
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Hothouseflower Jul 2023
It is horrible to live that way. I know from having lived apart from my husband for 8 years because of my sister in laws care needs. Things are better now for us but it was tough time.

Only thing to say is each day is one day closer to your ordeal ending.
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The one thing that bothers me the most is my dad thinking I should drop everything for him and not really wanting me to be happy.
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LindaO57 Aug 2023
I know what you mean, my mom thinks if she’s happy then everyone should be cheerful and happy. While she is sitting on her butt knitting or watching endless hours of tv I wam cleaning, cooking, do all the laundry and waiting on her hand and foot and she wonders why I am depressed, tired and just don’t want to go anywhere on the spur of the moment.
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Wow the non awareness for the caregivers is a common thread here. I thought i was alone. With my dad being constantly rude or all about him 24 /7
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Way2tired Jul 2023
The non awareness is very common
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My parents didn’t do any caregiving for their parents so they truly didn’t understand how hard it was for me to do caregiving for them.

I wonder if most parents who did care for their parents, if they expect it from their children. I have told my girls that I never expect them to do caregiving for me.

My caregiver days are over but I felt like they would never end. It’s a hopeless feeling.
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Way2tired Jul 2023
Some elderly truly don’t realize how much work it is to care for them . They lose insight , or are in denial . They think they are independent . They are very focused on their small world .
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The one thing that bothers me the most is how I’m treated. Also, I want my life back. I want my life to be 100% mine.

It seems right now my life is CO-OWNED.
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NeedHelpWithMom Jul 2023
It is essentially co-owned!
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Not being able to spontaneously do something.
Having someone in my house ALL the time.
No alone time.
Having to redo what she's done.
Repeating everything I say, multiple times throughout the day.
Cleaning $hit off the toilet and the floor.
Having no support from siblings
Oh... Just one... I have so many....
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imdone Aug 2023
Oh BeeSuz I hear Ya!!
I agree with everything you posted except about the siblings, I have none so I do the above alone.
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“3) my favorite . When you would run into another daughter who was also with her Mom and you give each other the nod.”

:)
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Actually I didn’t mean any envy. I meant I understood how it’s possible they’re laughing, so cheerful. It’s only possible because they have no elderly parents they’re caregiving for. You see it clearly on their faces.
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Way2tired Jul 2023
Venting ,
Oh , yeah , you are right , it’s a realization that your world is different .

On another note ……, I remember I would take my Mom to the store , and I would get “ one of the looks ” from other shoppers .
1) the pity look
2) the why do you have that old lady out look
3) my favorite . When you would run into another daughter who was also with her Mom and you give each other the nod .
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Venting ,

Ah yes, envying other’s lives. Some of my friends totally escaped any caregiving and are enjoying life . I also happen to be younger than most of my friends and they are retired . They have time to do whatever they want . I don’t have time to join them. Meanwhile DH and I work and have been caregiving on and off for many years . First my parents and now his .
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NeedHelpWithMom Jul 2023
And the thing is that my parents didn’t do any caregiving for their parents, so they didn’t understand how hard it was for me.
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You know what’s weird?
I’m at the mall right now. I see all these happy, laughing people. And I’m thinking, “Yeah…they don’t have elderly parents. No wonder they’re so cheerful. They have zero stress.”
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JeanLouise Jul 2023
Personally, I think it's worse with a husband. Seeing happy people living normal lives and I eat my heart out. my 24/7 burden is never ending.
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