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

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. I even built a small iOS app called RespondrID for this — it made day-to-day care a little more manageable and emergencies less stressful.

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.

same Here. I cook, clean, take care of her full time. Clean her messes, handle her meds. She is incapable to do anything on her own She never appreciates anything . It’s all about her. I could drop dead and she’d worry where her snacks were and she’s mean!!! She won’t answer when I try to talk to her . She’s moody as hell . I know she’s sick so I try to overlook it but I’m so abused I just can’t

I get that completely. What gets to me most is how thankless it feels sometimes — like all the effort, sacrifice, and sleepless nights don’t even register. Some days it makes me feel invisible too. Then the guilt kicks in for even thinking that way

Mine is being the only caregiver and living with her and also just losing myself and the life I had.

Just wanting this to finally be over already. I'm pleading with God for this to be over already. I'm sick of watching my father linger. He's a step up from being a vegetable and yet he just lives on.

Easy to say "it's the disease talking or acting out." Lord knows I'm guilty of this. But, dagnabbit, there are days when dementia is its own beastly self, I hate it.

Falls

I get exactly what you are saying! But thats not what bothers me the most. Mine is that everything I say about them making their situation better on me, and themselves goes in one ear and out the other and they sometimes don’t even listen to me. I live 45 minutes away, and have my own home and husband, and it seems they would expect me to be the one to come back and live in their smelly (cats),hoarded house with no air conditioning, while I am the one doing it all there. It would be more helpful if they give up their home and move closer to me or live with us. They won’t budge, but yet I feel the heavy guilt of it all because I choose not to live with them and be at their beck and call 24/7. Why on earth do I have to have this awful, heavy guilt that’s making me physically ill!? 🤦🏻‍♀️😖

I can relate! Just got diagnosed with breast cancer and the hospital calls while we’re running errands and she assumes it’s for her.