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

What bothers me the most, is that my life’s a mess right now. (I’m just venting; not looking for feedback). I helped my mom a lot. My work is chaos: I don’t know when it’ll be OK again. I really don’t like chaos. I’m one of these orderly, organized people.

My husband was diagnosed at 40 with young on-set Parkinson’s Disease. He passed at 64. We were married 39 years but the last 10 years were very hard. The final 5 years were extremely rough. I often felt that my life was only about pee and poop. He also had psychosis with delusions and hallucinations. I mourned the loss of my husband when he was still there. But it wasn’t him. I worked hard to meet his needs until the end.

I feel very similar. My husband is relatively young, 74. He is hydrocephalic. His dementia comes and goes, along with some anger issues. I have been taking care of absolutely everything! Him, the house, the yard, the bills, the taxes, etc. etc. I have a very bad back, so some things become difficult for me. But, if he wants help, or sees a dirty dish, or is hungry, etc., he can't understand why I haven't taken care of it. This frustrates me to no end!!!

I hate when there are compound crises and everything just snowballs. Today was that day. The smoke situation in NYC is beyond awful. My mother woke up short of breath this morning and needed to use oxygen for the first time. That was upsetting for her and for me.

Then I tried to put her air conditioner on to filter the air only to find it wasn't turning on. It was working just fine the last time it was used but of course today, when the air quality in NYC was the worst in recorded history, was the day that the circuit breaker gave up the ghost. Why do things break down at the worst possible time?

I am thankful that it is fixed but I'm still so stressed and upset about all of it. I wish I can calm down but I can't.

I provide total care for my husband. He has stage 4 Emphysema, diabetes with severe neuropathy in his feet/legs. He is alert but mobility is an issue. With assistance he uses a walker to move from bed to lift chair or bedside commode. I finally with encouragement from his MD put him on long term Hospice care. Yes, I have a lot of anger issues. He is a retired RN but refused to take care of his medical issues when he could and should have and now I have to give up my life to care for him. (I have extreme GOOD health.). Oh I forgot to mention his alcohol and gambling issues. (No gambling now) So now I keep him on a strict diabetic diet, do not allow drinking and we argue about my bitchy ways. My elder years are being used up caring for him and my anger is because he did this to himself. I get mad at myself as well for not being more forgiving. 57 years and I can’t seem to get past my anger.

I am sick and tired of home health companies. They don't pay their staff well enough to attract high quality candidates, they don't train them enough, they don't educate them and how to comfort and upset or angry elder, they don't do anything if a caregiver doesn't show up, the turnover rate is impossibly high.... I could go on and on and on.

The one thing that bothers most is that I'm an only child and I do not have anyone to share in the care giving. Everything is on me. I'm taking care of my needs ( which often go undone) and my dads.

My Mom does not even have Alzheimer's disease. She is nearly 87 years old and every conversation leads back to subjects about herself. Over and over again. I ignore it and change the subject. I am a retired RN yet she dismisses and argues with every suggestion that I give regarding mobility or the importance of taking her medications. She won't use a walker, wear shoes or get rid of her throw rugs. She turns a wheelchair backwards to help her walk. Yesterday she got up without using any assistive device, she fell (again) and hit her head on the floor this time, she broke her pelvis two years ago. My sister was present and the event terrified her. Because she is on blood thinners she went to a Trauma center in the city. Big problem for her kids, we are all in our 60s now. Thankfully she just ended up with a few sutures. Today another sister and I are going over to my Mom's house. We are hiding the wheelchair, getting out her walkers and moving furniture and rugs. I am not being accommodating anymore. She will ACCEPT my expertise and experience now and do as I say. I raised 4 children and taking care of my Mother is harder and more frustrating than taking care of toddlers and teens.

Dear Maria,
You truly hit the nail on the head. There is no “ You” in their world, only “ Me”.
And it invalidates you as a person.
In a very long career of caregiving I have been worked like a rented mule.
I try to remind myself that a drowning person is just trying to get the next breath.
They can’t think about me. But, bless you for what you do. You are storing up your treasures in heaven. The world needs more people like you, selfless and caring.
But right now, I have the opposite issue. My client, who is also a dear friend, is profoundly disabled. He is totally dependent. Because of this, he is extremely aware of his caregivers needs and what he can do to assist us. This may sound like a beautiful thing, but in fact it is heartbreaking. If I am tired or not feeling well, he will refuse certain things to make it easier on me. He does the same with other caregivers, including his family.
Frankly, I have never seen this conduct before. But he was disabled as a child almost 50 years ago, and is an exceptionally intelligent person.
When the one who needs help is concerned about the helper, well, it’s just too much on them.
Better that they stay in the stratosphere of “ help me” rather than take on even more issues.
Does anyone else out there know what I mean?

My mother has been confused for a couple of days. She seems better today. This came out of nowhere. Brought her to her PCP today to rule out a uti. Will get results tomorrow. Also asked Dr if she now needed oxygen because she was complaining of shortness of breath. Her EKG was good. Her bp is 120/59 way better than mine, and her blood oxygen is 100%! I now don’t know if her complaining is manufactured attention seeking drama or not.

@ Hothouse.
My DH would agree with you about watching the decline . We’ve noticed a significant step like decline in physical condition of his father . He was walking much better 6 weeks ago after rehab . I encouraged DH to take this weekend off from seeing his Dad . So we took FIL out last night to a diner . He was having a lot of trouble walking with his walker especially up the outside ramp to the door to the diner . No more . From now on we take him out in the wheelchair until we can’t get him in or out of the car anymore.

Just sad witnessing my parents’ declines and very depressing. I wonder how long their bodies can continue on like this. It’s amazing and horrifying that they their bodies haven’t given up yet.

And I’m horrified because I am looking at how it will be for me in 27 short years and I don’t want it. I decided to start smoking again and up my drinking and hope for a massive heart attack.

A new problem has appeared, just as I was relaxing. It must be solved. I’ll help my elderly sister again.

I'm really relating to the ALL ABOUT HER in the headline today. My mom has this image in her head of the attitude she thinks I should have toward her, namely the old 'sainted mother' routine. I guess *she* thought that about *her* mother, who was a homemaker, but I certainly don't think that about her. When I was a little kid mom went back to school, got a professional degree when I was 11 or 12. I mean, fine, more power to her, have a career, but the fact is that plus her extremely busy schedule of volunteer work meant I spent a lot of time alone. I don't really remember much time with her at all. I have one lots older half sibling who bullied me while Mom did nothing. Again, it seems like a lot but I've gone to therapy and dealt with some of it, and I'm willing to help Mom but as the saying goes I'm not willing to set myself on fire to keep her warm. According to her I should fix everything for her including stupid mistakes she made on her finances, such as very early retirement, selling all her stock at the bottom of the market in 2008 - now she can't afford to keep her hoarded house and is looking to me to help clear it since she's in her mid 80s and disabled.

I should note that Mom lifted not one finger for her own parents (since she was in another state busy with her career), and when my dad got sick from a terminal illness she left him and shunted his care off on me. I had to leave my own career and move back to our family's hometown to take care of him, luckily it all worked out b/c I met a guy here and got married, but I really would have chosen differently had I known how all of this would play out.

Mom is medically fragile with a couple of lung conditions and recently lied to me about going out to a gathering of people while unmasked, before she knew I could see her on Zoom, long story. Honestly I was so upset since I'm high risk covid myself that I told her I would need a little break from her and honestly it has been wonderful. I'm sure she's sitting over there stewing that I'm not waiting on her and jumping to her every beck and call, but y'all - I just can't. I don't think I had realized how depressed I've been dealing with both her and her sister to whom she's inordinately close, the same sister SCREAMED at me a couple of days ago for saying I was upset over Mom being reckless with her health and mine. How selfish I am, it's not all about me and on and on. I mean, what the heck? I know this sister doesn't think I'm doing enough for Mom, but she also didn't live through being ignored and bullied.

I just don't know how much more of this I can take. Mom won't call my half brother she wouldn't protect me from because she "doesn't like him" - well, what would she do if I died, or more likely moved as far away from here as I can get? She'd make do and frankly I think I'm going to stay away a while longer and make her find some other resources. I just can't carry this load any longer by myself, thank heaven for my cousin who takes care of my aunt or truly I would be in the loony bin. Thanks so much for this place and a space to vent y'all. I'm going to need it I have the feeling.

For me it was missing my mom as she was and watching her wither away slowly. This is the worst disease so heartbreaking

What bothers me the most is that my mother always argues with me about every single thing and never believes me. When she told relatives about her porch falling down I said, "No, it's not." Then she screamed at me, "Shut up!" Should we not correct people with Alzheimers? Just let it go? Just let them tell their stories?

My most frustrating example is when she gets in her mind that she still has little children and why won't they come home then there is the where is my husband and why won't he call or let me know when he is coming home. this can go on from about 3PM till 3AM and nothing I can say or do will get her to move on. Then there used to be 4-5 times when I was not watching and out of the clear blue she would leave the house and go knocking on the neighbors doors until someone answered. I pretty much solved this by making sure she was always locked in our bedroom when I had to use the facility or some other small task

Siblings are the biggest problem. They harass my mother and upset her, and I have to keep picking up the pieces. She is physically and mentally well, but this won't last forever and I dread to think of the effect they will have on her if she becomes ill. I am in limbo at the moment, not quite a "carer" but acting as her unofficial PA, personal companion and bodyguard (if I wasn't living with my mother they would force their way into the house). On top of this she is so nervous that she panics when I go out with friends because she thinks I'm "leaving her" or "moving out". My siblings are younger and are living their lives, while I am living my mother's life. Venting here helps a bit but what I really want to do is just leave and never come back. I can't abandon her.

What bothers me most is the repetitive questions. Mom will start getting hungry and will ask me what are we doing for dinner. I will tell her I am starting to prepare it. Ten minutes later she will ask me again, and then again and again. I don't much enjoy cooking and preparing meals in the first place and being continually questioned about it drives me up a wall.

What bothers me the most is my own mind. I'd like to switch it off for a few minutes. But my mind keeps racing with different thoughts and worries. Perhaps it's not my mind that bothers me. Perhaps it's the worries themselves.

Losing my freedom! Feel like a prisoner in my own home. I can't go anywhere for extended periods of time. For 30 years I spent my summer vacations visiting her (she lived in a different state) and now I would like to go on summer vacations with my husband. This now entails hiring a seriously expense caregiver in order to go. She moved in with me 5 years ago and doesn't really have any friends here because she lived in another state all that time, so there isn't anyone for her to visit etc. My brother stopped helping the minute I stopped paying him to do so.

Karen, it seems you are the 'Mother' but your siblings are merely the 'babysitters'. (They don't have or feel the same responsibility).

I am not sure what the 'cure' is besides putting in your own stops & arranging the extra help you need. Easy to say. Sometimes very hard to do. Strength to you today 🤗

A couple of things....when my mom stays with my siblings, I take care of her meds, laundry, doc appts, scripts, oxygen supplies, every health concern and grocery shopping. When she's with me - I still do it all. I don't have help except for a meal here and there. It doesn't matter that I ask nicely, yell, set a schedule with siblings - it all goes by the wayside. I don't get how they don't realize /care how much a little bit of help goes a long way. Secondly, my 95 yr old mom is pretty easy but doesn't really try to make things easier for me. Someone said in another post you just have to say no and do what works for us, the caregivers. That really resonates because it's hard to say no to my mother who I love and enjoy most of the time and is still there mentally. Her body is failing and I know it's hard, sad and frustrating. It's also not going to get better and yet it seems she thinks she should get better. Where's the gratefulness for living 95 pretty darn good years?

@linda06.
Can you get your parents placed in a facility ? Is that an option. Do they have money ? Or Medicaid ?

My dad is so demanding and doesn’t think of me or my health, he’s not real with it right now. He follows me around the house in and out of the bathroom a million times then wants me to cover him up when he gets back in bed. He wakes me up in the middle of the night to cover him up. He definitely has mental issues. I’m at my last rope he’s killing me.

Having to hound anybody for true help. Doctors, home health, medical equipment suppliers, therapists, etc. I feel like I get nothing done if I'm nice kind and patient. I have to turn on my grouchy b*tch attitude for people to truly understand that I NEED HELP!!!

squirrel, i get every word you're saying. ❤️🙂
and i love your screen name. i bet you're a cute, sweet person.

when i have so-called friends asking how my LOs are, i actually block their numbers. they're wasting my time AND adding yet 1 more thing for me to do: write back, etc.

my true friends really care. and my LOs' true friends really care, too.
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i wish all of us on the forum a good day! courage & always do very nice things for yourself. treat yourself like the angel you are. ❤️🙂

Hi Everyone,
What frustrates me the most about caregiving is the fact that in order to get services I have to be the one to stay on it...to keep calling these agencies for a PT, or home assistance, and this is even after a doctor has given me an order of approval. This last time the physical therapy never started because it took so long for them to get evaluators (nurse and supervisor PT) out and this was after I called them twice. Now the session will end in a week and my mother has not even begun the PT. This has happened before. My other "pet peeve" is people who know my mother from way back (she's 92) and ask me about her; sometimes they text me and ask. I say it would be better to call her and chat a bit, so she can hear a voice; so she can be part of a conversation where maybe she can laugh and remember. And to my friends, do not ask me how my mother is doing unless you are ready to invite me for coffee and offer a real, compassionate ear. Because you will get an answer of "okay" and I will turn away. The nicety is not needed because you really don't want to hear the answer. Instead, if you want to support a caregiver friend, ask them out; give them an escape; give them little of your time, because they feel isolated, just as much as the loved one being taken care of. This may be mean, but I want to say "Don't ask about my mom, unless you really want to hear about her."

The fact that there are only 24 hours in a day but since we are living the lives of 2 people (ours and our loved one's) then we really need an extra 24 hours in the day to do everything that needs to get done ( including making every single minute decision)

The overwhelming sense of failure that you have when they die. You did not cause it and, Yes, you did everything you could possible do to control it (which is impossible)....and they still die. You spend years mitigating every single issue, resolving every problem you can...and they still die. There is never a positive outcome.