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

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.

” It all started a long long time ago”.when my former father in law died I was 28.My dear sweet mother in law asked me to make the funeral arrangements “ because I was a nurse”. I was so scared because I had never done that before but I didn’t want to let her down.She was very happy with what I had done.
Several years later my mom had a stroke and She lived with my dad but I cared for what they needed. My 10 yes ten siblings thought I was the perfect one because…. “ I was a nurse”. My older sister was a nurse too but she was exempt as she was married to a doctor. After the second stroke 2 years later she went into a nursing home and dad started declining andI got divorced. My husband said my job was to take care of him not them( he was 35).
At 50 I Remarried and ours was not and 22 yrs later is not a blended marriage but God has my back.His dad died unexpectedly 2 months before we were married and again I was in charge of everything except the funeral because his brothers are inept and his sister … well she was the daughter and I was just the “daughter in law. As mom got into her 80’s she needed more help and we drove 1 1/2 hrs every 2-3 weeks to help. One brother did grocery shopping when it was buy one get one free so he could take the free stuff.Buy 85 we were seeing her much more often from increased falls only to have her tell us she is an alcohalic.That was the beginning of our nightmare with falls,hospitalizations,drunken stupors( she could drink open now that we knew.Her princess daughter lives out of state and never helps just criticizes what I do. My brother in-law doesn’t let my sister in law help so” the nurse gets it all”.last yr she fell and laid on the floor for hrs. My b- I-l found her and picked her up and put her on the couch and left because he had an obligation.W e got there the next day and she had never moved because she couldn’t and was full of pee,and poop and had not eaten in 16 hrs.Can you picture this family yet?We took her to the hospital where she was there for a week then rehab 2 weeks then moved her to an assisted living near us since we were the caregivers or I should say the only ones who cared.Assisted living isn’t what it used to to be and she has declined and I have taken on more care they won’t. My s-I-l wanted us to take her in to save their inheritance.Now 13 months later we now have to start research over to look for a nursing home.Again daughter doesn’t want her inheritance spent and the funds are moms to use for her care first and anything is left then inheritance.I keep ledgers monthly and she demands I send copies every month. The 2 sons visit once a month and usually nap for their visit. I am no saint but I believe in dignity and caring for our elder parents.i am so sick that the Profession I chose should be used as a excuse on me doing it all and them to do nothing except give advise that isn’t needed. I firmly believe it has nothing to do with me being a nurse but me being a caring child giving back which everyone should be capable of but few choose it.It has caused such stress in our marriage and I have told my husband when mom is buried that is the last I ever want to see his family. I have had panic attacks and cried myself to sleep not because of his mom but because of his family. His one brother even asked for…. “ an advance on his inheritance “ 3 yrs ago! Who does that. .Lets be clear it is her money until she dies ,for her care, not your supplemental income for them.
Ok I know I ranted way too long but thank you ,I needed that. And on top of it My husband has prostate cancer and the medicine causes memory problem which only adds to the situation… oh happy days! I do not know where I would be without God, the Bible and my devotions for strength and comfort.God bless us all.

I agree about the "Only thinking about herself thing". I could be laying on the floor with a broken leg, and she'd just say, "When you have a moment, can you get me ____". [If it's something she can do, I just tell her to get it herself...THANK YOU "burntcaregiver"!!!]

However, the biggest thing is THE ENTITLEMENT ATTITUDE. I'm helping my mom now (never really liked her, due to her being entitled, a hoarder, a narcissist, and that she has never valued my opinion as an adult), and while she typically goes along with the rules I've now given her, we have our moments where it's the last straw that she's questioning me.

1. I want her to physically be in bed by 10, as I want that to be the habit with her as long as possible, so I'm not up 24/7 with her having a weird sleep schedule.

2. I don't want her drinking her favorite drinks after 7:30pm, as she can really suck them down if she likes them, and I'm trying to cut down on her up/down all night thing. She can still sip on her water if she gets thirsty or has to cough.

3. I've locked up all the snacks so I don't have chocolate and crumbs all over her bedding (been there, done that, and I refuse to do laundry just for that reason). She gets snacks when she asks for them during the day, and when she's not in her bedroom, provided it's not going to mess with her lunch or dinner appetite....she's not going to eat crap all day.

4. I don't keep a pristine house, but I enforce keeping messes to a minimum. She's been a hoarder all her life, and she is now shaky on her feet and using a walker now. I finally got the mess to a dull roar...all she needs is to trip, or pass out and fall (due to low blood pressure) over a stack of stuff and hurt herself.

5. I have severely cut down her sugar intake--she was having around 150 grams of sugar a day...conservatively before I moved in. I do have a few treats available to her that taste sweet, but are not sugary. Also, if there's no sugary stuff in the house, I wont eat it either. Her doctor is happy about this, as she was borderline diabetic before.

Those are the main 5, but you get the idea...I don't do things to be mean to her, but because they are what is best for her/both of us. When she gets all entitled/or tantrumy about any of those it does not go over well.

That as the eldest daughter it is my duty to look after my mother with no help from my siblings (she has p*issed them all off anyway). The next expectation is I leave my husband to live with her when she gets more infirm. Like OP I could have 2 broken legs and she would want me to come over.

So I asked her when she looked after her parents or in laws.....NEVER. Fortunately I have POA as I believe if she has a fall in the she will never recover (89, still managing to live on her own).

The mental strain of having to deal with her really takes a toll on my well being. Narcissistic as well.

Burnout for SURE. It never ends. It could change at any second too and that’s what is so overwhelming-those calls you get. My sibling helps when available. Caregivers come and go but in the end it’s me. Hang in there everyone. Use your FMLA leave if you work full time and your state offers it. Sneak away to Starbucks or lunch if you can. Buy yourself something fun like a new nail file-I did! It can be anything, doesn’t have to be expensive. Journal, call or text a friend, stare at clouds, whatever you need and can squeeze in. My friends don’t get it. Their parents are still independent. Mine are not so much, at least with food and their house and a disability and their PHONES. I feel for you all that have it way worse with Alzheimer’s and those things. I live in my own home but I go and help, check in, cook, clean and of course visit. I do love them but it’s draining and tough. Year 5.

Well, I've answered this question before, but want to give an update. Currently, my Mom (90 years old, in assisted living, worsening dementia), is driving me insane over the gift cards I bought for each of the staff. She called me five times about it last night. I asked the director how many employees are there (14) and bought 14 gift cards plus one for the director. Wrote a note in 15 greeting cards, sealed the cards and put them in a gift bag with some chocolates. I gave the bag to the Director for distribution. I don't know the names of every employee on all shifts. I trust the Director to distribute them honestly. My Mom is obsessed that I gave a card to the woman from hospice who comes out twice a week to give her a shower. I tried to explain in 5 different phone calls that I didn't give this person one (my Mom didn't think she should get one). Finally told my Mom just not to worry about it. We were supposed to go out of town this week to get away during the Christmas holiday (long story - very painful time for us). We didn't leave because the fuse in our oven burned out and filled the back room with black smoke, and we are trying to get it fixed. I should have called my Mom to let her know we are still here, but I didn't. I just didn't want to get into some more BS. Not sure I will even let her know that we will tell her that we didn't go at all. We had set up her tree and nativity set, taken her out to eat three times, and drove her around to see the Christmas lights. That's enough. I have been depressed, anxious, and feel like crawling in a hole and dying. All I want is one week of peace with no phone calls. I know what some of you will say - one day you won't get any phone calls, then you will be sorry. No, don't think I will.

Every day I have a new thing that I hate the most because there are so many to hate. Today's is the hoops I'm jumping through about my father's Medicaid issues. All this for a man who is one step from being a vegetable and should be gone by now if life were actually fair. And sad to say his very existence is making me miserable. I can't even stand looking at him anymore.

I don't feel any compassion anymore. I am horrified by what this five year experience of caring for parents did to me. They pretty much betrayed their children by their failure to make their old age plans. The plan turned out to be their daughters. They really thought that their house would be the carrot and stick for us to fall in line to take care of them.

I am horrified by the person I've become .I used to think of myself as a decent empathetic person, but I just don't feel any empathy or compassion for him anymore, I just feel so angry and when I am not angry I am frustrated and scared about how much longer he going to continue to live and suck the air out of my life. I don't know what happened to me and I don't know if I will ever be the same again.

@BurntCaregiver
Thank you. Even though I was a caregiver for so many years, I didn't realize I knew very little about long-term care insurance. Basically nothing.
My Dad died when he was very young but my mom lived till almost 94... No long-term care insurance and it was difficult trying to find adequate care for her. Now that my husband and I are older... Well in our mid-60s... We're starting to really realize that our children may say that they'll take care of us, But they literally have no idea. Not a clue. Here's hoping we qualify... If not I'm just going to start saving money like crazy.

I'm 65 and am actively planning for when I am no longer able to care for myself (I hope I don't live that long). My husband is 71 with a chronic illness, and I don't expect him to outlive me. My four children have no intention of doing anything at all for us. I spent so many years caring for my Mom and Dad. People are living too long, and as a result we are seeing a lot more dementia. I don't want to live that long. Medical aid in dying would be a blessing at that point.

Yes! same here I was choking and my HWD was just eating his ice cream didn't care. And you're so right about them only caring for themselves. I'm the Only one No One helps at all
He won't let let me alone at all he goes everywhere with me noone cares
Our own kids don't want to deal with it at all won't help.
It's Soo hard no time for myself only when he sleeps. Finally I get time for myself.
I Hate this Disease!!!

I spent a couple of days with a 76-year old friend who is the primary caregiver to her 95-year old mother (who is in a home). Her mother is very demanding, and my friend (who has her own health-issues) is worn down in body and spirit. Her life/retirement is not her own. I think that a 76-year old having to be a caregiver to a 95-year old is simply untenable.

I hope it's okay to list more than one. I have been caregiver for over six years for my spouse. I never knew it would be like this.
I was thinking about this just this morning. I have so many things. I am in the same boat as you. Husband could care less about me, it is only all about him all the time, even if I am ill or have injured myself beyond the point of helping him (due to him). I'm still working full time to help pay for his care, trying to manage everything so he can stay at home to pass, as are his wishes. He refuses respite so I can take care of myself and have a break. I have paid caregivers to care for him, but they didn't care for him. I have had difficulty finding caregivers in my area, agency or private. They steal. They damage our home - put holes in walls, black ink on kitchen counters and floors, tear up my kitchen linoleum, stop up the toilet, mess up the electrical system. I have to pay even more to fix things. My silverware goes missing. My non-stick cookware is no longer non-stick. Food that I work to prepare for him gets wasted as it is not fed to him. Caregivers that think they can charge whatever they want, knowing I am desperate for care. I have little support. I have reached out but found very little available. Agencies I have utilized blamed me for the things the caregivers did.
Incontinence is one of my biggest things. I have such a difficult cleaning it all up, so much work.
What a crazy world.

Having to many hats to wear is my over stress issue. I cannot plan meals that he will eat, cook, clean, do his expenses and billing (and mine and my disabled sons) go shopping, visit my son who is in a home 2 hours away and be home 24/7 to make sure dad doesn't fall or do something that is harmful to himself... and also keep doing things that support my mental ability to carry on (struggling with my attitude daily)

JustBreath, Sorry about your miserable siblings. I would also tell your sibling that he won't get even 1/10th of any assistance from you should he ever need it.

Setting aside the failures of the U.S. healthcare system, how it mistreats elderly people, and requires NONSTOP advocacy, I’ll tell you what sets me on fire/bothers me about my caregiving responsibilities… it’s the constant “weaponized incompetence” of my siblings when it comes to any and all aspects of assisting with the caregiving responsibilities.

Both of my siblings INSIST that I take on way too much; in very accusatory tones. Yet if I ever request the simplest of help (after they’ve criticized me for not asking for help) - I’ll suggest that maybe they could ask a question of a nurse, do research for something happening or make a phone call to lighten my load… and they feign complete helplessness regarding the requested task.

I will NEVER understand them. Ever. I feel so much resentment at this moment. Likely because I haven’t truly slept in forever.

For the life of me, I don’t understand how I, the only single one now (and over 65) ended up having to leave work way before I could afford to (8 years ago) because I was pulled into FT long distance caregiving for our aunt. And now the bulk of care for our mom, who lives near me.

And I will NEVER forget the day my brother said to me - “ I hope you know that no one in this family will do for you even 1/10th of what you’ve done to take care of Aunt R.” I told him that I am fully aware of that fact.

Over the last 14+ years, I have come to view my “highly educated” brother as completely inept. And my sister as a person barely capable of having a conversation without her yelling…even at our 93-year old mom. It’s disgusting.

But they both want to constantly give me instructions on things they know nothing about. Absolutely nothing. Because neither of them read a word of the information that they request and I send to them. So yea… make it make sense because I cannot.

I’m sorry for ranting like this. My aunt, who was historically kind of nasty, is now pretty gentle…she’s 99 and does NOT have dementia. And my mom is kind and I believe has an understanding of my siblings’ behavioral issues.

i just pray I live through this…

I don’t know who I am anymore, aside from this woman who gets sh*t done for other people. I exhaust myself…

What I miss most is my husband’s intellect and the conversations we used to have. Now it is likely he can’t follow a simple television show, a sporting event on television-let alone discuss current events or family issues. And then there is the loss of his ability to handle household duties. And he knows it which angers him.
And then there is the loss of empathy, but that was one of the first things to go. So, obviously, there is so much I miss

There isn’t just one thing. It’s the whole situation – it’s my mother refusing help when she needs it and just watching her drive it herself into a ditch, it’s trying to figure out my own boundaries because I have my own chronic health issues (Migraines.), it’s dealing with my idiotic, angry, narcissistic jerkface, brother who lives in the past and still blames her even though he isn’t perfect either.it’s having a 10 year-old at the same time as having an 85 year-old and being torn between these two needy people and then it’s forgetting myself. And then it’s listening to the whispers of whether I’m caring enough for mother from people that don’t know us and love to act like I should be doing everything for her. And then it’s my mother mistakenly think she’s “independent“. I live far away. I have to fly to see her but when I get there, she cancels the care she does have and I’m literally running around for 72 hours nonstop except for the time I get to go for a walk. Did I mention that it’s dealing with my jerk brother? The one who just smoked weed for 40 years and doesn’t have the ability to string neurons together to form a decent thought.

I'm going to post something again just because all your comments have touched me. Please do whatever you can to get some respite even if it means hiring a CNA or caregiver by the hour even if it's just a few hours a day few days a week. Our loved ones tend to be nicer to the skilled workers than they are to us. I have been both, a skilled worker and a daughter of a narc mom with dementia. It's impossible to do it all by yourself... And sometimes it feels like a thankless job when you are the child of someone who doesn't know or doesn't care about what may be going on in your own life. Do whatever you can to get some kind of respite. If siblings won't help then they won't help.

The absolute selfishness & entitlement of it. My husband died from glioblastoma. He was young. Many of us have a sick spouse or children with special needs. Does society tell our parents to quit their jobs, stop raising kids, stop being a present spouse and move to us so our loved ones can "die in place?" Of course not! Yet, suddenly when they have needs, which they have had an entire lifetime to save and prepare, unlike my sweet husband, then suddenly church, other family members and society will tell you how terrible you are for not helping. I guess elders get a free pass! My husband's brain cancer was unexpected. If you are blessed to live, old age is not unexpected. I went through absolute h@ll watching my husband die. Guess what? None of that matters because my parents expect me to turn around and take care of them now. It's not happening.

I totally get this — I’ve been caring for my grandmother, and it’s exhausting when it feels like your life revolves around someone else and your own needs vanish into the background. The guilt is real, and it doesn’t make you a bad person; it just shows how much you care.
One thing that helped me a bit was organizing her critical medical info, medications, and emergency contacts so I didn’t feel like I was constantly juggling everything in my head.

That everything is all about her. Just like you said. And that all the people who have not made one single effort to go visit my mother in AL believe her when she tells them her kids don't even visit her. I could have been there 2 minutes ago, and my mother would think I hadn't been there for months. That she lies, constantly. No, I don't mean confabulates. I mean she lies. Any story she can tell and make her self the victim in it, she will tell it.

Caregiving was my occupation and I loved my patients as a whole. The downside? Their family members who seem to think that I could wave a magic wand and make their mom or dad's dementia go away. The family members who were fully aware that that when I go home they have to pick up the slack and caring for their beloved mom with dementia. The "please make my mom better" comments were unreal and they were not open to learning about how dementia progresses. All the while I'm doing this my own mom has dementia and lives in another state.

So many things ruminate in my mind. Right now it’s how all this care is going to be paid for. 2 parents with tremendous care costs and funds will run out in 2 years. I’ve consulted financial advisors and Medicaid lawyer. I wish I won the lottery. Ha ha.

I find that some folk suggest that single and widowed people 'might like' to take on the full time care of an elder, not even necessarily a relative, as if to suggest that our lives aren't really as important, or as busy! It has happened to me more than once, but thankfully this site has helped me navigate this issue. I do offer assistance to some of the senior folk around me and in the family, but it's the assumptions and spoken expectations that sting!

I'm a volunteer caregiver. I would sit in on nights when my brother has to work. What gets me is the stubbornness of my mother and unscary risks. Not using her walker or elevating her feet for the swelling go down. I am on a fixed income, and a caregiver is expensive. Even though I volunteered to watch mom on the few nights and not really obligated for those nights, I feel obligated to not leaving her alone. Today, she was just discharged from the hospital from a fall this morning. Even though a loner, I do miss my retirement at home.

Sounds like there was an issue already at play before the caregiving.

There are 2 things that bother me most. First, is that I can get paid by the state to care for two family members. I retired 10 years ago. If it was money that I needed, I would have continued to work. I loved my career. I retired so that I could travel, read and relax. I want my life back.
The second thing is that they don't recognize my level of stress because of my physical appearance. I look great at 73yrs.
I have always taken care of myself. I have fallen off my horse and can't resaddle. My balloon has a major leak. Caregiving is physically, mentally, spiritually and financially draining experience in my life. I tire of people telling me I can handle it because I look great.

My sister moved into my house on an emergency basis when she was thrown out of assisted living. I thought she would be here short term because we’re trying to get her into another assisted living situation. So for 2 months I considered her a guest. Just before the commencement of the third month, I told her I wanted to be paid for room and board and light care. Someone must be available 24/7, but otherwise she only needs meds administered, scheduling, transportation and accompaniment to medical appointments. The thing is when I asked for payment, she acted like I was stealing from her so I delayed another month, but I still want paid for that, and this is unsustainable, going forward.

I will be going back to NYC next week to visit my father and have a knot in my stomach.

I gave up my lease to my apartment in NYC in July. I was staying for month long stretches visiting him at his NH. I felt guilty I had to do this but I can no longer afford to have two residences.

I will be going back next week relying on the kindness of my friends to put me up for one week. I have been home for over a month now which has been so relaxing and nice. It has been a very long time that I haven't felt like I was living out of a suitcase.

Not looking forward to going back watching him sleep and drool and filling up the time with inane chitchat only to have him stare blankly back at me. I am hoping he finally won't recognize me on this visit and I can feel some justification in not going anymore. I just want this to end.

Lack of good sleep. He’s up several times during the night.

My biggest issue with caring for my mom is not being able to leave my house. I am 71, a widow and have always been very active. I lost my husband seven years ago and as he was dying of cancer he told me to please keep living. I have been trying to do that. As of two months ago, I stopped because I cannot leave home with Mom alone.

My passion is still riding my motorcycles. Up until about two months ago, I was doing that almost daily, all year round. I have ridden for 55 years (my husband also rode) and it was my life. I have one sibling who moved several thousand miles away. I am thankful when she or my niece comes down for a few days to watch my mom so I can go away on my bikes with my friends. It is my only peace. I keep trying to remind my family that I don't know how much longer I will be able to ride, which is pretty much all I want to do. There isn't much else that gives me pleasure.

I had a TBI thanks to a drunk driver who hit me when I was on duty, many years ago which greatly effected my ability to read and retain anything so it has been difficult to do sedentary activities. I can't even sit long enough to stay focused through a movie. I can't paint, draw or do any woodcarving because my mom lives with me and I just can't even focus on any of those things for a short while because my mom distracts me everytime I try. I feel like I have been kidnapped in my own house. I am frustrated and depressed. My friends have stopped calling me to go riding because I have to tell them no. I hate being at home all day! I grew up going to the beach which is only three miles from my house and was riding there everyday that it wasn't raining. It is also my favorite place to talk to my best friend-husband, my hero my Dad and others I have lost. I also pray so much easier there and my broken mind does so much better there. I miss seeing my local friends there and fellow riders of all ages.

My husband helped my through much of my post TBI life and I struggle to take care of my own things AND my mom's. I stress about it constantly. It takes me likely ten times longer to take care of my bills, paperwork, etc. I was in cognitive retraining, OT and speech therapy for two years following the drunk driver hitting me. I couldn't go back to working as a police officer. So I have had about all they can do for me.

I have had hospice for Mom for a month. They are wonderful but the volunteers why can come to watch her can only do so for a few hours and not very often. I greatly appreciate the shower lady who comes as that is a difficult task for me,

I have a standing appointment to see a specialist who doing some brain/eye rehab (a result of the DUI) and it is about an hour and a half away, every week that I have had to cancel twice. I've been going for two months

I'm trying not to be bitter and resentful but I'm going downhill fast with depression and am trying so hard to find a solution to get my life back. (My PTSD from my career, becomes exacerbated with stress). I just want to ride everyday again. That's my life, peace (I can't and won't think of anything else when I ride, only being safe). My Indian motorcycle group is my family. They are mature thinking safe riders and are mostly couples with a few singles and younger riders too. It was my only social life as well. I'm not ready give up my life to babysit my mom as my riding days pass by so quickly.

My mom is 94, healthy except for her dementia. She isn't angry but her memory is the biggest problem and I am beyond frustrated. She doesn't have long term care but her money wouldn't last long if I had to put her somewhere. I hate that she has to live like this. She has always been a good person to everyone. It's sad and frustrating. My head trauma has obviously made my life more challenging.

Thank you for letting me vent. I see that many of us are in the same frustratingly rocky boat.