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Im her daughter' but treat like her waiter.
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The thing that bothers me the most are my two brothers who want "their" money now and do nothing but look for ways to monetize our mother's estate while she is still alive. She is in a nursing home, they want the house rented out. Or to move her back home so we can save money on the nursing home.
I look to the future with dread as I expect them to drag me into court after my mom passes, as they have already bothered me with lawyers' letters asking me for an "accounting." I told them f off as they weren't yet entitled to one, so they shut up. But I know that once she passes I will have to give this accounting and I dread having to deal with them.

Caregiving is hard enough but when you have malevolent people out there trying actively to do you harm much less ever HELP with anything it makes it so much worse.
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robinsoul Oct 2019
I had similar situation. And for my mom's sake, not only mine, I had her sign Power of Attorney over to me since I was only one looking out for her best interests. You will probably have more decisions to make on your mom's behalf while she continues being in nursing home.
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PamelaGunn....I'm really sorry and I understand because my 2 brother's never called or came by or anything with my dear Mother.I just don't know how they live with themselves after all the love and care she gave them.I guess I'll never understand.
She's so lucky to have you.Take care of yourself,as best you can~
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My biggest gripe is that my housemate for whom I am guardian and caregiver (dementia) has twin daughters age 50 who contribute zero towards helping their Mom-no money, no respite time for me-only phone calls to check in.
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NeedHelpWithMom Oct 2019
Typical for many! Sorry you have no help.
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Having to bite my tongue when being treated poorly or rudely. Biting my tongue when my mother is factually incorrect, but there's no point in upsetting her by constantly correcting her. Being patient, letting my mother finish sentences - it can take a looooong time.
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Takincare Oct 2019
Hard to find a bandage for a bleeding tongue isn't it?
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@MariaLake I know how you feel. My Mom with her dementia behaves as if my duty to her as her last son is THE ONLY thing that matters ...and she refuses to understand that my fiancee is a priority to me. (PS she still refers to her as my girlfriend).

The selfishness in the elderly is extremely frustrating...no matter how much time you give, they will claim its not enough...and if another family member visits ...your sick elderly parent will convince them that you are the most ungrateful, neglectful child in the universe.

The selfishness is what I hate.
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grammyshelper Oct 2019
Amen to that. That is truly one of the hardest things about the caretaking journey.
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Hello

Waking up multiple times throughout the night to take her to the bathroom, I’m grateful she can let me know she has to go and not urinate in bed (even tho there are pads on the sheets). Every day without a restful sleep is very exhausting for the both of us in the day time.

I have read some heartbreaking stories on here of what caregivers/family members are going through. As far as behavioral issues (I feel I’m lucky so far) however she does want things when she wants them at that moment, another words doesn’t know how to wait a minute anymore and in a restaurant or at a party once she’s done eating she takes her top denture out and she’s ready to brush her bottom teeth and rinse her mouth out, I’m grateful for this that she is trying to keep up with her hygiene and that we are able to go out, others stare, talk, comment - I have learned to ignore people that don’t understand this brain disease they are not experienced enough in the matter at hand.
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Unitetogether Oct 2019
Hi Dollie,

Yes, our sleep is important to keep going the next day. I dread when my husband calls for me when I'm in bed, however know I have to get up. He's been pretty good lately and trying to go before I go to bed. The answer to the question here, what is the thing that bothers you the most about care giving. Well, mine is, like I'm sure I said before on here... is having to "change" my husband for the rest of his life. Your lucky your wife can walk to the bathroom. There is always someone that has it worse than you. Maybe she drinks too much liquid before bed time? Anyway, take care of yourself to.

Big hug to you,
Unite
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The thing that bothers me most is that no matter how much I, my kids or my brothers do for my mother, age 85, nothing will ever be enough. Everything is (and always has been) all about her. We have her over, or go to her place every week for dinner, and do plenty of other things, do her shopping, take her to doctor appointments, tidying up her apartment, etc. She makes no effort to get involved in her own community and thinks that we, her adult children, should provide her entertainment. She is, to quote Woody Allen, the East Coast distributor of guilt. Her regular mantra is "You're all just waiting for me to drop dead", which I am sad to say, will soon become a self fulfilling prophecy. I do not want to feel this way, I feel awful about feeling angry and disgusted, but I also want to protect my own mental health. I made the mistake of calling her this morning (I stopped calling her in the mornings because it has the capacity to destroy my entire day) and I am at work, twisted in knots, and have a collossal headache. The worst part is, I know it will never improve, as I am well aware narcissists do not change.
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Lostinva Aug 2019
Marianiki,
I fully understand the struggle. My mom asked me last week if I prayed every day that she’d not wake up in the morning. That actually hurt my feelings & angered me at the same time. Their selfishness always shines through doesn’t it?
Sounds like you could use some respite time. Make it happen. Many AL & nursing homes have respite care. Not cheap but definitely worth it. I have mom pay for it out of her SS!!! Feel better!
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Thanks for replying Maria lake, I totally agree with bad nursing homes so we are left with no choice. Unfortunately my mum doesn't fit into nursing home category as she becomes well within 2-6mths after each incident and still has her memory and movement but after 16yrs it's has left me a broken woman. I'm in Australia and our nursing homes are no better, major investigations going on at moment re how patients are treated & staff ratios oh the list goes on. Horror Stories. I don't understand how it's completely regulated for kindergartens etc but not nursing homes. Mum would fit into assisted living well here but refuses to consider it & guilts me. Assisted living here in Australia is they have their own 1br unit but get together for meals and outings. She doesn't think she's old enough to be in one....she's 72 for crying out loud. Thanks for letting me vent, I'm having a very bad week. Caregiver burnout big time. Much love to all carers.
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NeedHelpWithMom Aug 2019
Vent anytime! Hugs!
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The major one thing I do not like at all, is the constant isolation and lack of social activities. My 94 year old mother with mild Dementia rambles on all day shouting at the TV screen, sings songs to herself over and over. I can deal with this most of the time because i realize the disease has affected her brain and no matter what I say to her, it will go in one of her ears and right out the other one. I finally bought myself a cd cassette player with headphones and will begin shortly to listen to audio tapes. That way I will not hear her singing and chattering 3/4 of everyday. However, the lack of adult conversation and going out socially remain on my list of not liking the role of caregiving! I'll probably miss her her incessant chattering after she's gone.
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NeedHelpWithMom Aug 2019
Me too, Essie

I hate the isolation. My mom is 94 in November. Yep, she was born in 1925. The other morning I went in for my lab work. When I was asked for my date of birth I accidentally gave hers! I am so used to giving her birthdate that I automatically said it. Oh my gosh, the woman looked at me like I had two heads saying that I was born in 1925! Hahaha
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She doesn't know any better. It's the Dementia !
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Caregiver,

I love that show! Cute show.

One of my favorites! I like some of the older shows best. I also love King of Queens. Cute shows! Yes! Both of those make me giggle.
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Tiger,

You are absolutely correct! Guilty as charged. I do too much, then get grouchy! Haha. Sometimes delirious too!

Do me a favor and keep pounding sense into my thick skull!

Sometimes we try to trick ourselves into thinking giving in is the easiest way and it’s truly not. You know, I didn’t take the easy way out with my girls. I put in the hard work and I certainly should be the same way with mom, right? Take the easy way out with kids and we end up with spoiled brats!

Take the easy way out with parents and they expect more and more too! Hahaha
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Thanks, Polar

I hate being in a funk! I’m at a loss as to how to feel. I don’t know what to say or think.

I get so sick of feeling inadequate when I do my very best. I have no idea why I get angry when I think of my mom never ever went through any of this with grandma. Grandma wasn’t negative. Grandma didn’t have Parkinson’s. Grandma was independent. Grandma was pleasant. Grandma didn’t pick on others, she was encouraging to others. My mom was blessed to have grandma as a mom. I am happy that mom and grandma had a great relationship. Maybe I am jealous of it. Maybe it’s resentment and anger. I’m sorry that I feel this way today. I will force myself to block out these feelings.

I so want to feel that I am blessed by my mom but things are so different. I can’t even put into words exactly how I feel and I don’t want to bring others down because of my funky mood. Going to try to get past one stinking paragraph in my book. Talk later. Thanks again, Polar.

I slept all night from pure exhaustion! Well, she woke me once, screaming at my dead father in a dream. I honestly didn’t mean to but I shouted out, “Please, shut up!” Guess what? She did! Went right back to sleep. Sometimes I feel like I could sleep for a week!
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anonymous828521 Aug 2019
Dear NHWM, glad you rested well one night. It's only human to need replenishing. If we only 'give', we remain empty. That is a harsh way to live. (I'm guilty of same). What shall we do? Small changes can mean a lot, & please choose the ones that will make YOU the happiest, not your mother. God will not dislike you for it, He may even wonder why we punish ourselves so much. I hope I can further help you, (will gladly listen to gripes:) It's difficult to see every reply, so use PM if I can be of service. Get started😅
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The stubbornness. My 84 year old father insists on moving to a cheaper but excellent AL. (He's on a very long waiting list and his condition is getting worse,not better.) He asks my mother to do something about it, but my mother has tried and her hands are tied. My father also says that he doesn't need a guardian, He is not incompetent. We explained to him that he can no longer take care of himself, it has nothing to do with his mental state, but he doesn't listen.
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The co dependence, Enmeshment (Google Enmeshment& I bet it sets off alarm bells for caregivers) & realising that they have been preparing all their life for you to look after them in their old age & training you mentally to do it, all unknown to you until you look up Enmeshment. It's scary.
Despite the fact that I won't have anyone to look after me when I'm older because I've given up of relationships and friendships because taking care of her always gets in the way. Boy do I regret saying I won't put her in a nursing home unless she has Alzheimer's or is in a wheelchair. I have built my life back more than ten times, after she has recovered from surgery or a fall or mini strokes. I'm have now given up....her well-being takes over every time. The one thing I am doing for myself is starting to save money for my future which yes that means we have to move to a less desirable area to save on rent but I absolutely do not feel bad about this decision. It's my future. & I'm taking my power back.
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NeedHelpWithMom Aug 2019
Good for you! Yes, we become prisoners, always pleasing them. Not that easy to place them either because they saved just enough to put them over Medicaid but not enough for assisted living and they do not want to spend down to go in a hell hole nursing home and yes, there certainly are hell hole nursing homes in Louisiana and if you don’t believe me I certainly invite you to come stay at one if you dare. If you haven’t seen our nursing homes than don’t judge. Louisiana and Mississippi have the very worst ratings! They may have a couple here and there that are passable but not in my area!
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It bothers me that I’m getting the cold shoulder from Mom (sooo mad because of talking to her ‘diner friends’) & found that she had stayed overnight at the 24-hour diner and fell off the diner stool (Aug. 8). After her ranting and yelling at me on phone 8/9, that I ‘hassled’ her friends at diner & ‘acted like a fool’ in speaking to them, I haven’t heard from her. Her granddaughter turned 30 and grandson moved out of state last week. Either she didn’t remember or, again, is giving me the cold shoulder.

Left voice message today hoping she’ll take it easy in this heat and that her a/c is on (heat wave #5 here).

Experiencing her cold shoulder for just trying to care that she’s safe, given lots of reasons to know she’s not making good decisions. So far, caregiving sucks (and I’m not actively giving care as the only child living 10 minutes away).
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NHWM - Good night! I hope you can relax and have a restful night. Leave your worries to the higher power to take care of. Remember the song Que Sera Sera. What will be will be.

Taking many slow deep breaths usually helps me relax and calm my mind.

Good night! Pleasant dreams!
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I try to do everything to protect my mom from hurting herself and she ignores my wishes. I feel like giving up. The frustration, depression and anxiety comes back no matter how much I try to fight it off. I’m going to bed. Sleeping is my only escape. I just hope that she sleeps through the night so I can have a rest from it all. That is, if I don’t have freakin nightmares. Sorry for my bad mood. I’m on the verge of tears so I am going to bed. Goodnight. I’m so drained. I hate trips to the ER! Right now I hate most everything.
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CaregiverL Aug 2019
NHWM, I know this might seem like silly advice. but I’ve found the sit com, “Mike & Molly” makes me laugh. Even after the worst day...they still make me laugh 😂...hugs 🤗
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For me the biggest thing is determining where her controlling, demanding, selfish behavior ends and the dementia begins. I find I have little patience when you try to help and try to make things easier (safer and more manageable) with complete resistance. And it's getting worse. She argues because she insists she's getting better (89 with mobility issues and other physical limitations) and will not listen to any suggestions to improve her life. I'm committed to helping as much as I possibly can, but it's a never ending battle.
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Shell,

How are things going with your mom? I hope things aren’t quite as bad. My mom has been super critical too. Who knows what they are thinking or feeling? I’ve just about given up on trying to figure it out.

You deserve better. So do I. All caregivers do. Some older people change but most don’t. I hope that you are feeling better.
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Takincare and pasa,

Both of you make excellent points and speak for so many in the same boat!
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Takincare Aug 2019
Thanks for your feedback, you know exactly what we were saying because you, as many here have or are living it .
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I get you. It's bad enough not getting acknowledgment from the one you care for. But that is to be expected. I wish everyone would ask me how I am and what is needed if they had concerns about my mother. I have a long list of TO DOs. What bothers me is the opinion that I have the "time" and am "living for free" while remaining in the home of my elder mother who is 96 years old and wishes to remain in her home. I am trying to honor her last years. I did so for a sister who passed away in 2014 and who also moved to my mother's home the year prior. So this "free" thing bothers me. I've been caring for over five years now. I had to help move my sister move from her house, clear space for her belongings here, and arrange to donate her belongings following her death. I have been going through this process of the swedish death clean of my mother's home the past two years while caring for her to make it safe and clean and livable here. My mother had a 'helper' for maybe 8 months who pretty much just boarded here and to me it appeared the helper really needed space away from her boyfriend (she did not want to be a nanny to her boyfriend's kids). This 'helper' wanted additional income and had her own agenda. Several others have wanted to be a 'helper' but seem to have their own agendas as well which is why I remain still. Only a neighbor college student who just moved was a good fit. I haven't found trustworthy and reliable help since. Although I remain grateful that there is some socialization around holidays or special occasions for her, I remain irritated me with family members who show up at their convenience like visiting dignitaries and with no regard for my mother's very strict routine of meal times and routines which I make clear but is largely disregarded. Only one other friend who visits monthly is in tune with my mother's schedule. Again, back to this "free" thing, I lived here following a brain tumor diagnosis long ago at a time when I was going through a difficult custody situation. It seemed that monitoring her while having stability for myself was a good fit. However over the past two years, 24/7 care and supervision and maintaining and repairing everything I think I've paid back fair market value 'rent' if it needs to be monetized. She would be in a home and still might need to at some point soon if she is not mobile. I'm doing as best that I can.
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Takincare Aug 2019
I completely understand your situation. You've found the schedule that works best for mom,meals, meds, and all the rest of the "fun" stuff that goes into daily living. Family members who are not there and do not help have absolutely no clue what it takes to care for her and what disruptions to her schedule can do to her, nor do they care. They will not ask how you are, if you need a hand, or even a short break because then they just may need to actually put in serious time as opposed to popping in to visit and play good time charlie for her. Their thinking is that you should be happy they show up to see her,they've done their job. The only thing worse is when our LO is told we'll be there on xyz day to see you mom, maybe we can go to a local diner for lunch, LO is excited, takes extra care with their morning rituals, choosing a special outfit to wear, and is let down time and time again because something else came up and visitors forgot to tell her the night before. Frustrating to say the least and no matter what you do to help take the heartache away (including taking her to the restaurant, putting your schedule further out of wack) doesn't help because the pain of being stood up again by one of their children cuts to the bone. Hard to say, accept the fools for what they are, they won't give you the courtesy of a call in advance or share details of their plans because in their world you, as a caregiver do not matter or count, only they do. You know what you do for her, you spend the time with her, they are the losers because they have given up any meaningful relationship. As far as living "rent" free, what do they think a live in caregiver would cost? Their room and board is expected plus pay. They would not be doing heavy cleaning nor home repairs so now you need to add cleaning service bills and handyman fees into the mix. They have no clue, you're doing a great job, doing what is in mom's best interests. Do you have mom's POAs? May want to look into it if she's capable of assigning it to you. Would make your life easier when the time comes to enforce them
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The lack of assistance from 2 SILs. One trying to get $$$ (not a little bit, but 37000 )from MIL on a consistent basis, the other who doesn't want to get involved with reining her sister's actions in, not my problem deal with it. Telling MIL to have me get her favorite TV dinners (hello what part of low sodium 1400mg diet don't you understand?) The other who has absolutely no clue about MIL health/care situation, last bout with her was not bringing portable O2 machine into stores or restaurants. MIL has daytime O2 as needed, nightly for sleeping tho due to TIAs and another heart issue this week being evaluated for 24x7 use, when confronted about the situation of needing to have it, machine is a lifesaving device which can also make her more comfortable if the time had come by allowing her to breathe and not gasp like a fish out of water, that by the time she would get O2 to MIL it could be to late or more damage to the brain, her reply was if she's going to crap out let her crap out. These are her daughters, I can't not let her go with but I can't trust them with her safety and wellbeing. Husband has tried reasoning with them and her to no avail. I want MIL to be as comfortable and safe as possible, do I think she's much time left? More than likely no, but only one person knows when our time comes. Instead of being there for her, they make life harder and much more difficult than it needs to be. I've been given the line "it's not your mom" ,so why am I the one making this journey with her and not you? Husband does what he can to help, there are things for her modesty and self esteem that I do, washing up, bathroom help, all cooking (he was fired as chef early in our marriage for all of our sakes) He does help with cleaning and laundry which is a blessing in itself. He is her POA, leaves most medical to me so I can explain situation to him (he's present at visits but admits he doesn't know what to ask about her care, or has admitted that he wouldn't have thought to ask certain questions for clarification, I've been this route with my grandparents, great grandmother, and great aunt)Just wish spawns of satan could get THEIR acts together to make what is left of MILs life easier and happier.
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Being a caretaker to L/O is hardest job ever had! You put yourself out physically, emotionally, and financially to someone who doesn’t have capacity to understand what you are doing for them.

Almost daily I hear I’m a rotten daughter, I’m trying take advantage of her, I want her money(now that one is pretty funny).

My mantra has become this is not my mom saying these things, it’s the disease speaking for her.

I just had a birthday, it was first time mom actually forgot. What I heard from her instead was how I’ve taken over her life and put her away. Mom’s in a board/care facility which has a monthly charge higher than my rent, beautiful room, private bath and lovely patio right outside of bedroom (which by the way her pension no way covers)

It really feels good to vent..the truth is I know I’m doing the right thing for mom, at times it becomes overwhelming but know I will continue to push through.
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What bothers me most is that everyone I know who is widowed or divorced is moving on with their life and I feel stuck. My husband is 61 years old and we have been living with Alzheimer's for last 5 years (diagnosis came a year ago..) A TBI happened to him in 2008 which is likely the reason for the early onset.
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Oh you made me laugh!! It’s like that with my Mom! I hate the selfishness too!
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The thing that bothers me the most, caring for mil with a stroke and dementia, is her loss of basic manners and patience. I also take care of a 4 month old and a 2.5 year old but she needs to be helped first and is often jealous of her grandchildren if they get helped first. I feel guilty that I cannot accommodate everyone at the same time but the baby comes first unless there is an emergency.
I also feel bad about that.
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Unitetogether Aug 2019
Hi, you have a lot of caring to do. Right, i would say the baby. First to. Sounds like you have your spouse AND Two grandchildren?? Don't mean to be snoopy, just like to know others situations to help understand their lives. Icare for my husband. Not the life i wanted. Our lives to me is terrible. It seems to be okay with him...
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There is a lot of things that bother me about care giving. But today, its that I feel I can't do anything right. My mother has brow beat me so much in the last 3 yrs that even now that she has stop, I have taken over for her. I look in the mirror and I don't even recognize myself anymore. Once upon a time I was strong, independent, bold and I knew who I was, now I have no idea and I don't know if I will ever be that person again. And its the not knowing what will happen next, what will she do this time? I guess today is just a bad day!
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NeedHelpWithMom Aug 2019
I get it! Sometimes I wonder if their criticism is due to sheer boredom for them. They are dependent on others and that alone has to be depressing and terribly frustrating for them. I’m not excusing the behavior, not at all but there is usually two sides to a story. Sometimes more than two! Sometimes it’s more like the two sides and the truth lies somewhere in the middle.
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We are in the early stages of having to care for my husband's mother. She is independent, drives, but when dealing with a recent crisis, she became impossible to deal with. She was cruel to her son and whining with me. Her anxiety is through the roof. The hardest part: I can see that I am going to have to balance my health and her care. I came home one night last week and my blood pressure was 193 / 104. I was able to get it down pretty quickly by breathing and then meditating. I prayed and retook my BP a few times and it was going steadily down. Right now my BP is perfect, but I had to control my thoughts and conversations. My husband is a few years older than me and he too has some health issues. So we've already decided that the hard we will do is fight her and get her into AL.
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