What is the one thing that bothers you the most about caregiving?

You made me laugh with that one, Marialake, and your photo is my favorite flower. I hope people will bother with my long post.

I could be bleeding out too, and my dad with ALZ would just be obsessing about when I'll feed the cats, even though he just watched me do it.

For me, a big thing is also feeling like a "nothing" in his world. I have aides here during the day while I'm at work, but I live here with him, wait on him hand and foot, help him bathe and dress, try to keep him entertained and play games with him, I have a motion sensor in his room so I can get up and be beside him in a flash in the middle of the night when he gets up for the bathroom 2,3,4 times a night (can't teach someone with ALZ to use a night commode, that's for sure.) anything and everything he needs all the time. I love and miss who my dad was desperately, and this ornery guy left in his place is really, really hard to take, but I am still here for him.

Now, I have an older sister who lives not a full hour away here on LI, and she just does not visit or call to see how he is/ I am doing. Nope. I gave up calling her with updates about Dad, as she would just laugh it off and change the subject. She did actually come over once this summer on a super rare non- Christmas Eve visit just to tell me point blank that she simply CANNOT help out, because, well, she has 2 girls in school. I just stared at her blankly, because her "2 girls in school" are away in college. She must've gathered my nonplussed expression was because of the ludicrousness of her statement, so she quickly put in, "Well, yes, I know they're away at college, but I'm VERY involved." I know my nieces very well, thanks, so I also know that these intelligent, super-busy young women are not just falling apart, waiting with phone in hand, wondering what to do next without my sister's 24/7 involvement. Sis had come over that day to try to get me to put Dad into a nursing home, which is interesting, because Dad paid very good money for a very long time for a very good LTC policy that enables him to be cared for at home, which is what he specifically wanted. I thank my lucky stars each and every day that Dad had the good sense and foresight to have planned for this so long ago. So I told my sister thanks ever so much for the visit, we're good for now, you know very well Dad does NOT want that. She said, well, I can't do this, and I don't know how YOU are. No one will judge you if you want to put him in. So at that moment, it became clear that maybe she feels a little guilty that she (and the rest of the family) knows she isn't doing squat. But that's her problem.

And that's my sister. But I had to tell you this, as this brings me to what I hate the most.

So given all this, if you, or I myself, ask Dad if he has any children, why, yes! Yes He Does!

He has ONE daughter named BLAH BLAH BLAH, and proceeds to recite the full name of my sister whom he seldom sees or speaks to, who didn't even come to see him in the hospital ON HIS BIRTHDAY, she just texted me "how is he?" as I sat there beside him for hours, desperately trying to explain to him over and over and over and over why he was there, no, we can't go, no you can't rip that IV line out, etc.

It doesn't get any better than that, folks. One daughter. The one he never sees, that will not lift a finger on his behalf.

And then I feel guilty for being petty and selfish, because I know fully well that this is just one of the special charms of this disease, and that this phenomenon is as common as dirt. And don't get me wrong, his answer changes constantly, and occasionally he does know me. But emotionally, it hurts like hell on two fronts. That the parent you love so very much and would do anything for literally doesn't know you're alive, and the sister you also love so much literally abandoned you and Dad when we needed her the most.

Not having any "me" time. I'm caregiving for my 89 year old mom with Parkinsons' and she gets anxious if I even leave the room. So, it's all day every day in the living room with her, and usually she has the tv on all day. I do get some respite during the week when nurses come in. I love my mom and am glad I can be there for her, but it definitely isn't easy.

Just one thing?? Ok.

I have to say that it is the nagging feeling that my life is now "on hold". Everything revolves around my husband. I love to travel but now he won't go anywhere and makes it so difficult that it seems just not worth the trouble.

What bothers me most? The all consuming feeling that I'm bailing out a leaky rowboat with a thimble.

My father, age almost 92, has become incredibly anxious, with decreasing self-esteem. He's totally emotionally dependent on me, my husband and my mother, whose dementia is worse than his. He won't leave her alone for an instant, even following her into the bathroom so he won't be alone.
He follows me, too, with questions I've already answered multiple times. He makes me feel guilty for needing some time to myself. When I need to go shopping for the household, he asks over and over again, "how long will you be gone; when will you be back?". I can't just say SOON; he wants to know to the minute. If I'm "late" getting back he has nervous meltdowns, whining to me that he "needs to know these things" and that "nobody keeps him informed"... nevermind I'm expected to phone home every half hour.
I keep my brothers informed about these daily hassles, but they don't really understand because they don't spend more than an hour or so, every once in a while with Mom and Dad. Despite this lack of first hand experience, they always "know better" than I do what Mom and Dad need. I know I'm echoing many other answers to this question. No time to myself; endless repeat questions; hands-off siblings who do little but criticize; no rest, insomnia and utter exhaustion. And yet, we must soldier on. One more: geriatricians who cannot seem to comprehend that every problem is amplified and made worse when caring for two co-dependent seniors with dementia. It blows my mind that their doctor fails to take into consideration the principles of family dynamics.

Darlene. Leslie. So true. A year ago my mother took her bath at 930 pm, nightly. I never even had to question if she brushed her teeth. She wore make up. Wanted to go to beauty salon. Wow. How things have changed since September. I have aides in twice a week to bathe her and brush her teeth, cut her toe nails. You’re so correct. Their worlds get extremely small

Sadly, she does not even realize she's reacting in this way. Once this illness starts their world gets smaller and smaller with each passing day. To the point they don't even think about themselves. They stop washing their face, combing their hair, or even brushing their teeth. She's not like this on purpose.

same thing for me. My mother is worse because she likes to say things to seem like she cares but she has never shown any care in her life. It's all about her and her pain and she'll say she is concerned about those around her while she self destroys for me to take care of her. The song more than words brings me to tears because it's just so true.

What bothers me most is other family members have no idea the daily grind and what I have given up to care for my home in her home. Now, I am am doing this because I want to and love my mother and she wants to be at home. But I am appalled at how clueless people truly are about what is involved. Not that I am looking for attention but I feel so isolated now that I am devoting so much time to caring for Mom. I miss being social and being able to see a friend at a moment's or a few days notice. Have not gone overnight with my boyfriend in 7 months and only see him two hours a day.

Having doctors and daycare staff tell you what should be done at home, and have it make a drastic change in cognition and ability for the worse. Then not really listening to the problem and just randomly picking items off their perpared list of responses. Some don't work, others make things much worse. No Alzheimer's patient is the same, and they don't have a cheat sheet that they can use to fix everyone's problem.
We have been fighting hallucinations and sundowner syndrome for months. Tried something my Dr warned me would not work, and cause further problems.... Guess what? Hallucinations when away, cognition improvement, attitude improvement, everything is much better.
We started allowing him to sleep anytime he wanted all day, and stay up all night if he wants against doctor's orders. Works wonderfully!!!!!
Daycare is going away, and major changes here at home to adjust to his new cycle, but so worth the outcome!!!!
Medical professionals don't have the answer for everything, and sometimes you just have to experiment.
Sorry, I'm just so mad at his doctor and staff right now. They caused us SO much grief with their advise and program.

For me, having done it four times, yes - four times. Never again. I did what I had to do to the best of my ability no matter how it affected me. But what I simply will not tolerate and cannot tolerate is when people who are "afflicted" become nasty or abusive - it is devastating to me and I cannot allow this. I realize they may have valid reasons or don't realize they are acting in an obnoxious manner. However, due to the hard life I have lived, I can't handle this - have been through too much and I am very sensitive. I would do anything for anyone and have always done that but I cannot take crabbiness, nastiness, abusiveness - that is my breaking point where I have to do something at once to stop it. The rest I can handle but that - NO WAY!

I think the one thing would be that i am too exhausted to take care of my own needs. Sound familiar? Peace, dawn1947. ❤️

The smell. I hate how the smell, if it hasn't been cleaned properly, permeates the whole living space. I hate how it seeps every part and it is like a cloud that gets in your mouth and you feel as though you were tasting it. Ugh

Reading all the scenarios here and feeling so bad for those enduring so much and then wondering which may cross my path and if I will find inner strength to cope. I get so wiped out when ill and I know stress makes it worse and I don't know how to turn off the inner noise buttons.

it is a difficult and trying labor of love. To say the least. May God give us all strength.

That I just wish the emotional journey wasn’t so tremendously hard! That is the toughest part for me, the emotional roller coaster which some days almost breaks me.
I believe I don’t really deserve all I have to face..but then I realize that my mother doesn’t deserve what she’s got to deal with either. It is a lesson for both, I know; just sometimes I wish it wasn’t this hard. Only God provides the strength!

slp 1684
If she has someone with her 24/7, she doesn't need a medical alert button. I would start by getting rid of that.

The people who dont actually provide day in and day out care that believe they know better than you how to provide care. The know-it all nurses who've never changed a brief. The docs that haven't actually spent ANY time with them that hand out generic protocols. The Hospice that just wants them over-medicated and quiet. The family members more worried about their clothing than their skin condition, etc. I know there are good docs, nurses, etc out there but lately I've been dealing with the bad ones..

that some days it seems to never end.? thats my answer for today!

I think the thing that bothers me the most is that my mother will not give a compliment, but is very free with criticism, not outright, but passive aggressive. And I noticed it is mostly toward women. For instance, if she sees a large woman, she will say, " Dios mio! " (OMG! I'm Spanish). When I call her on it, she tries to say she's talking about something else. And she is quick to cover up. That tells me she had always done that sort of thing. Same thing if she sees someone homely or with messy hair, etc. I picture her as a "mean girl" when she was in high school.

As a child, I can't remember her giving me an attaboy when I did a good job, but man, never skipped a beat to tell me when I made a mistake no matter the size.

Took her to the salon recently. When the stylist was finished with the wash and blow dry, Mother told her she wears it in a braid everyday. As the stylist was braiding, she told Mother she came in with a beautiful braid and would try to do one as nice, and asked Mother of she braided her own hair.
Mother told her, "no". Then the stylist asked her, "Did your daughter braid it?" Mother replied ( looked my direction but didn't think I could hear), "No she didn't. I can't remember."
For real!!! I comb and braid her hair every dang day, and she wouldn't even give me that!!!

Then there's supper... I prepare supper every evening. My son and husband always say "thank you" when they are finished, but she never has...

My dad has Alzheimer's and had a fall in early 2017. The fall caused a brain bleed and they had to do a craniotomy. So we sort of have a mixed bag with my dad. Alzheimer's with brain trauma.
My husband and I had been married for three years at the time of the crani. We're in our 50's. My second marriage, his first.
After dad's surgery, they wanted to put him in a skilled nursing home. I wasn't having it! My mom went that course and it was AWFUL! That's a different story. I made the decision (on my own) that as POA, I was going to stay with dad until he recovered from surgery. I work full time so I hired caregiver's. My siblings were against the idea of me going home with him. They were eager to do a big yard sale and sell the house. My dad is 87. No health issues other than Alzheimer's. He could still live for several more years. I was against it and that made them angry because they couldn't do anything. I was the POA. I came home with my dad and my husband is at our home. We see each other when we can. My four siblings won't help at all. I made the decision so I have to make it work. I thought initially that I would be here for 6-8 weeks. It's now been 17 months. No end in sight. I tried to put him in an AL last December. That didn't work. Dad learned from mom's experience what is acceptable and not. Like a young child, he acted out of character while we were there for our walk-thru. The staff told me they couldn't take him until his behavior was under control. One even suggested types of medication. Recently, I was putting him in respite care for a week so my husband and I could take a trip. He refused to go claiming he was too ill. He has become the master of manipulation, and I created it. I work all day and serve the rest of the hours in my day and night. I just recently started to do things for me (water aerobics, book club, dinner dates with my husband) and my dad makes me feel SO guilty!
I want so much to have my life back even just a little bit. My husband and I did take our much needed trip. I couldn't get my dad into respite but my sister came. She only charged $3000.00 for 10 days. Yep...I'm eager to have my life back because this journey has opened my eyes to a lot of darkness and frustration. I don't mind all the runs to the store or pharmacy, poopy beds, walls or floors, or even the ER visits until the wee hours of the morning. Dad and I laugh more now than I used to cry...but I yearn to be in my own home with my husband. I want to have a normal life with all of its trials. I miss my comfy bed and the mountain air. I miss NOT having a next door neighbor that makes all kinds of noises in the early weekend hours. I miss having my kids and grandkids over for the weekend. I miss walks around the lake. I miss going to work and not having to carry my cell phone with me everywhere I go. I love my dad, and I'm sure that I'll miss this time we have had someday as well. But peace of mind is not always present in this journey for us caregiver's. That's what I miss the MOST.

Several weeks ago she fell 5 times in 7 days. Oh, everytime she falls, she refuses to go to hospitial, (she knows it may lead to a trip to rehap to gain her strength back) She thinks rehab is a prison. When she does go to the hospitial, cat scans (she is on plavix & asprin) xrays, passed the competent test (she knew her name & the president & counted to 10). Currenly Attempting to keep Mom at home with 24/7 care. She fell 2 weeks ago in bathroom again, while caretaker cleaning her oven. Last Friday night, dealing with the police 2'x , while she wants to kick the caretaker out of her house. First time I called the police and asked them what to do, they said they will go to the house. 2nd time my mother press her "medical alert" button and police back to her house. (Caretaker was able to show the police the POA and medical/mentally paperwork to police). While I was talking on the phone with Police her screaming in the background, "this is my house and I decide who stays, I pay taxes, I have rights ". Police told me 2 choices take her to the hospital or let caretaker stay. Police said they will not come back to the house if my mom keeps pressing the "medical alert" button to remove the caretaker and cannot do anything about my moms behaviour. My choice, advise police caretaker stay there and go upstairs away from my mom. I will drive over to her house. Now, I am thinking she should of gone to hospital, since the next morning was 'crazy' again about the caretaker and groceries I just bought. She will just sit at table with while chewing up her piece of toast acting like nothing happen! Is this normal? It tears me apart!

Lol, (same). I'm like the "butler", to my mother... If I bring 2 shopping bags full of supplies, there's still a list of things she needs, (or something wrong with what I brought her). It seems like I live in the grocery store, cuz AL doesn't supply any toiletries except t.p. for her. It's endlessly frustrating. I don't work since last year, cuz of all the phone calls from either her or the nurse. (Every week a new bullsh#t crisis). It all means nothing to me anymore. (Just a waiting game now, I guess). Have to set boundaries, & try not to let it get to me. Good luck✌.

Just now my 89 year old mom is arguing with me insisting her mother is still alive, even though she died 22 years ago. Also, the repeated questions all day long. It drives me mad, especially since she’s nearly deaf and won’t wear hearing aids.

The hardest part is being the only kid that does ANYTHING!!! Mother lives with me and I am exhausted. I have no sense of who I am anymore. I just exist to care for her. When I attempt to go out on a date, she calls me 10 x's to tell me that it is raining or the remote control is broken etc. I am an active single 52 YO woman who really needs her sense of life and personal purpose back. UGH the struggle is very real.

Melodie, you will very possibly kill yourself with caregiving your mother (you're on a heart transplant list???). Is that what you want?

I skimmed your earlier posts, and a lot of the animosity between you and your brothers has to do with your house, which is in your and your mother's names.

You were advised to consult an attorney regarding that several months ago. Have you done that?

Your mother's trust splits everything three ways, correct, but the house is not in the trust. How much is there in the trust, or is your house (you said worth $1.2 M in Marin County, CA) the main asset?

When the caregivers were hired, who paid for them? If you don't get this straightened out, you will be providing all of the caregiving for your mother in the future. Is that what you want?

If I was a doctor, I would make it mandatory that every senior with the slightest bit of negativity have a prescription for an anti depressant! My father is exactly the same way as your MIL. I dont think he has dimentia (although sometimes it seems like he does) but I really think it's more of a social issue. He's alone A LOT and probably feels like his life isn't what he thought it would be... I often wonder what he would do if I was in real medical trouble and he had to worry about me. I guess I am grateful that that isn't the case, but...

I can sympathize with this question with a little different content. My mother is 90 and had a stroke 8 months ago. It's been a LONG HARD ROAD..... My mom is not a real "Bitch" per say and she isn't really demanding BUT she is losing her short term memory. What happens with this part of the disease is that I am with her taking care of every single detail of her care. BTW I have two older siblings brothers who do NOTHING!!!!! I cannot even give them kudos for visiting because 1 has a business in the area we live, but comes to say hi "when the wind blows him in the direction of her home". Maybe 2 times a week (if that) My mom says "he doesn't stay long enough to fart (sorry) so she gets frustrated. The other sibling is 68 has lived with her for the last 30 years and has no had a job in decades. He has lived off my father (he is from a different father) and my mother for his entire life. We have been home from rehab since April and he has not even once come to her room and asked how she was doing. Never has and most likely never will. Both have wished my mom dead because for them this is just hard to deal with. When I heard these words I literally almost fell over. They have never ever ever done ANYTHING for my mom or given me a 10 minute break anytime. They are useless. I have learned EVERY detail of her care, I slept with her in a chair for three months in the hospitals ( regular and rehab) and I know everything about her health care, her thinking her heart everything. So I have become the scapegoat for everything. All I wanted to do was to take care of her, that is it. The depth of the stress they have put on me over the past 8 months is appalling. I pat myself on the back for raising 5 children on my own who have compassion, conscience empathy and love for others. Unfortunately I got it but they have NONE. They say they want their life back and I don't see them for days and days, which ends up being fine with me. My older brother was responsible for getting the groceries, medications, vitamins, other pills and medical supplies such as diapers, wipes, gloves, etc etc. I made notes and he would go to get them. Well that went to crap in the first few months. He went to the store or pharmacy whenever he felt like it. I waited 16 days for diapers because he just felt I could improvise and use something else. My mom suggested I get my own debit card to her account so I could get what we needed when they were needed. It was fine for about 2 weeks then I got reported to Adult Protective Services for misusing my mothers money. I was presented with a Domestic Violence Restraining order and was kicked out of my moms home for 21 days until we had a hearing. I tried to get the court to understand I was the only one who knew how to care for her but they said I had to wait. When my disgusting brother was unable to get his game playing retraining order I got back to my mom and she was close to death. She had not had a BM in 14 days no injections for her stroke prevention. Her blood pressure was 210/180 I called 911 and had her taken to the ER. She had infections in her entire system. Kidneys, intestines, Urinary track and bowels. She lost her ability to urinate because the impaction had closed off her urethra which cause it and her bladder to swell. She now uses and will most likely need a catheter for the rest of her life. It's a shit show I go to my moms house every single day and face consistent stress and abuse. ( BTW i should mention Im on the heart transplant list which was supposed to happen in Feb when she had her stroke.
I don't know if I can keep going. I have kids and grandkids who I never see, I cannot leave her alone with either of them when I was in the hospital for a couple days this month she got no meds, not even a toothbrush. Its a sin and I can do nothing. My brother says there is not money for a caregiver so every single day is MISERABLE I feel for all of you who have taken on these roles.

As long as you don't prop her up and support her unrealistic attitude she will eventually have to accept other alternatives mathisawesome. Your choice is to be strong and accept her wrath in small doses or be weak and suffer continuously for years... it's a no brainer.

These stories scare me! I'm not a care giver. I don't think I can care for my mother when its time. I love her, but she expects too much already. She thinks I should quit my job at 50-55 and take care of her full-time. We don't get along....at all. She insist I should move where she is and pretty much move in and give up my life. I can't stand being around her now when she is healthy....not to think when she is sick. Help! She refuses to go in somewhere when its time. She has tried to work me my entire life with guilt. I have a lot of anger towards her.....I don't I would be fit to take care of her. I think I would be mean....I'm worried about what kind of a person I would become. Help