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

Recently I would say that having to “manage the care” a facility that costs $6000 a month seems wrong. One might think giving basic care would be a given.

I’m really tired of having other people in my house. Even the ones I like, like the respite caregiver. I imagine it sounds weird and spoiled, but I just miss having our house exactly the way we want it, and being able to act however we want when we’re home.

I miss me. I miss my mom. The woman she has become is someone who mean, selfish and approaches life like 'Mommy Dearest' where nothing is ever good enough. Mom is 84. 'Moderate' lewy body dementia per the 15 minute visit with the doctor. Add mobility issues, cardiac issues and incontinence. And a hoarder for the last 60 years. I 'temporarily' came to stay in her home when she came home from hospital/rehab stay. That was 18 months ago. I am still paying rent/electric on my place as my husband and daughter are still there until there is space here. Trying to clear mom's house of 60 years of hoard that was organized into hundreds of small boxes. Two 30yd dumpsters later, i am still cleaning shit out. My oldest sister will come for a few days as she lives on the east coast, six states away. My brother is in a rehab facility for peripheral neuropathy. My sister that lived in town passed from cancer in May 2023. Julie's death seemed to accerate everything.
Mostly i hate watching Mom slip away every day and be replaced by someone i dont know.

I hate being the house "slave". I am trying to work full-time from home and I must get up AT LEAST 75 to 100 times a day from my desk. Today I woke up early because my dad wanted breakfast before golf came on this morning. I am exhausted and I need to put in a 9-hour day of work today which turns into 15 hours because of the constant interruptions. FML :(

The fact that my wife and I had to change our entire lives right after we got married. Also, the lack of support from family. My brother in law and his wife rarely help at all. They just took a trip to Scotland and are planning a trip to Japan - meanwhile, my wife and I are babysitting her mom all day.

I’m 35, single, only child. Caring for a mother who is 58, married to a man who does less than the bare minimum and thinks he’s husband of the year. She’s blind, can’t walk due to a stroke, has 4 autoimmune diseases, diabetes, bedsores that the local hospital let her get, kidney disease, she’s on home dialysis which I administer to her every single day, has an ostomy bag, and she’s prone to getting c-diff and other intestinal infections. I sometimes feel immense guilt because I feel like my life is passing me by and I am resentful. I take care of the house, pets, and my Mom 24/7. My car is the only car in our family so sometimes I can’t use it to go do something for myself because my stepdad will have my car while at work. I can’t work because of my home responsibilities. I can’t even go out to a movie or dinner with friends or date because I am the only one trained to give her dialysis and my step-dad isn’t helpful and tends to ignore her in favor of running outside to sit on the patio and smoke while listening to music. I do EVERYTHING. I felt obligated to care for her after her health declined in 2019. If I didn’t, who would? She and I have both dealt with thoughts of self harm due to everything going on. At one point she spent a year and a half in and out of hospitals and rehabs because she would skip dialysis for weeks at a time and would get so sick she would become septic and comatose. It started taking her 7 days or longer to “wake up” after she slipped into that non responsive state. She would do this because she felt like a burden and like her husband can’t wait for her to die so he can be free. Myself, due to her husband being verbally abusive to me, and seeing my Mom just refusing to cooperate and causing so much unnecessary stress on me. From December 2021 to July 2023 she spent a total of maybe 2 accumulative months at home. Everything else was in a hospital because of her doing. We also moved across the country in 2020 so I missed home and everyone there. All of these things caused me to eventually create a plan to end my life in late 2022/early 2023. I feel resentment towards my Mom for all of the stress she has caused me, all the fear, the physical and mental health issues she has caused me, for taking my life away (she didn’t. I chose to be her caregiver out of sheer obligation, but in my anger, it sometimes feels this way). She and I have a lot of past experiences that are unresolved and I still hold onto because of the pain she caused me after my Dad passed away when I was 17. So a lot of that past trauma seeps into my mental state as her caregiver. Sometimes it feels like a thankless, endless, 24/7, living nightmare where I am at her beck and call. I get little sleep because she requires attention and assistance at all hours. From needing food and drink, her ostomy emptied or changed, bedding, clothing and bandage changes when her ostomy leaks (which is FREQUENTLY), needing her dialysis, needing medication, needing the channel changed, needing to ask the time or a question, needing extra blankets, needing help bathing or dressing, etc. I love her more than anything and I would give anything for her. She is my rock and my biggest supporter. But sometimes I feel like her assistant or maid. I sit and wonder why me? Why her? Why us? When will we catch a break and live a calm life with no stress or issues? Will I be in this funk or rut for the rest of her life? I get so angry at her sometimes and I yell out of frustration. I feel like it’s because of all the times she yelled at me as a child over trivial things, and that’s how I know how to process my anger. Yelling at someone. She’s so weak and frail and apologetic and then I feel like a terrible person and an even worse daughter. It makes me cry and hate myself. I feel like I willingly gave my prime years away to care for her and I will never get them back. It weighs on me so heavily. But hugging her and hearing her say “I love you” makes it all go away.

People who screw over the ones who cared for their elderly LOs. I think there's a special place in H3LL for them. They better pack their bags, 'cause they're going there. Bon voyage!

The "slammies..." Our LO gets so angry when she's unable to understand or when she thinks we just don't get it... she gets terribly mad and slams things.

Im caregiver my mom91 she don't ask for much she really don't talk much mist of the time but she's getting where she can't get around much she don't want ti move in with any body .good mom but I feel so trapped at times been here 1 year and 6 months can't even go to store until some one comes up got two sisters that comes once or twice week im about to go crazy but I love my my mom feels like it's all on me don't see no change any time soon and I resent my sister's and brother's because they free to do what ever they want have 3 brothers and two sisters im I wrong to think like this I feel guilty im 71 and my health is not all that good eather

I get tired of "being the light" and trying to stay upbeat when all I get thrown at me is negativity, complaints and criticism.

That eventually I will make the wrong choice and that it could cost someone their life.

This is what happened to my grandmother (96). She was receiving care in her home and in between visits she climbed out of her chair, got stuck and passed. Likely from exertion or from suffocation. This happened within a 30-40 minute window in between aid care visits. Why is this my fault? Well you see I usually check in on her. However that morning I wanted a break and went to get my nails done. I forgot my phone with video monitoring and told myself not to worry, that I didn't need to be “on” that everyone was safe. How wrong I was. Only 15 minutes away and I could have helped.

Caregiving is like being a captain of a ship, you are trying to help someone get to the other side in the life boat with dignity and respect. I pray I honored her, I sure did try my best.

The fact that my sisters and I know it is not really appreciated because she acts like a queen and expects to be waited on and things taken care of. Every time I leave she says thank you, but you can tell it is not sincere

I am in the same boat.
My mil lives with us and is causing so much stress on my marriage that sometimes I just want out.
She expects things from her son and I that we are not capable of due to our own health.
A couple of weeks ago she was hospitalized for 2 days due to anemia. It was wonderful!
She has nurses and PT coming in a few times a week.
She knows that my marriage is on shakey ground yet says "how will I ever get well when there is so much turmoil." I responded by asking her how I and her son were to ever get well, if she doesn't stop and consider the health of her caregivers.
Her son won't set limits so I am stuck with being the bad guy.

Dealing with my family!! 😖

Im2Young4This,

That is a very bad situation in which your husband is putting his mom ahead of you and your marriage. His emotional enmeshment with his mom is keeping him from setting limits and making you the bad person. He needs therapy and ya'll need therapy, but if he is not willing to go, please take care of yourself and go to therapy. He has a script in his head, put there by his mom. When she triggers the script, he unthinkingly follows it.

I don't know how many times that I have read stories like yours here were either the son or the daughter is emotionally enmeshed with mom which causes havoc on both the marriage and the caregiving situation.

What your husband is putting you through is emotional abuse. He's not being faithful to you and in this case the other woman is his mom.

Due to various motivations like a divorce or a bad marriage, a mom will make either a son or a daughter into an emotional partner.

In one subculture of society this is crudely called being a "son-husband." Some therapists and writers prefer using the word enmeshment while others use stronger language, emotional or covert incest.

There is a wonderful book for wives in your situation. When He's Married to Mom: How to Help Mother-Enmeshed Men Open Their Hearts to True Love and Commitment. A book that may help you understand him better and how he got there is Silently Seduced: When Parents Make Their Children Partners.

In some marriages, this enmeshment is just below the surface until the caregiving of a parent arises. In other marriages, this is present from the start and fuels constant battles. Being under the surface or above the surface, it hinders the intimacy of the couple. I think this is beneath many others reasons for which couples get divorced. I hope that I'm wrong, but in my 67 years of living, I've seen it way too often.

Please get therapy, take care of yourself, set some boundaries with real consequences and I wish you the best. This is not in any way easy to do, but it must be done, not to change him which may or may not happen, but to protect yourself and communicate to him that you will be treated with respect.
 

It depends on the day .

Today it’s , she doesn’t have her ducks in a row , and the pond is drying up .

Being used by mom and rest of family to serve all her needs. 8 years plus being trapped by 95 lbs of entitled narcissist.
nothing is or will ever be good enough for her no matter how hard I try or how much of myself I burn up in the process.
I owe her according to her. Selfish!
So, I reckon the other kids feel I owe them so they can wash their hands of all caregiving duties leaving the pile in my lap.
Years of caregiving and loss of my peace and personal aspirations.
For what? I can’t even think straight anymore. Always waiting for the other shoe to drop and the AL place to call and dump more
bad news on me or ask me about her medications/needs or whatever whenever.
boundaries don’t seem to exist.
be it family, caregivers or AL nurses.?
its my fault for being a doer for too long. Now, I can’t do for me or her.
Beyond wiped out.
yuck

I am writing fro the other side of being the person cared for. First it is good to read your posts because it reminds me not behave if I can help it like the people you all are caring for. There is a real problem. We are living longer but not fully thus having to rely on our children or go into very expensive nursing homes.
i do not want to be the person that sucks the life out of my children . At the same time I love it when they are here. My husband mostly helps me doing the cooking , cleaning and driving. The kids fill in. I consider myself lucky.

You don't have to feel guilty about thinking she's an old battleaxe. What's ironic is that I never used foul language until I had to move her in with me. Now I think I would make a Hell's Angel blush.
Yep, everything is about her. I don't care what I'm doing, I have to stop everything and deal with her. If I don't stop, she will stand in my way and make it impossible to get around her. For example: even when I have an arm full of clothes she'll do it to me. I know moving her rollator so I can get by may make her think twice, but knowing her, she would shove right into me.

I heard something recently that struck a deep cord with me. As caregivers, we continuously give so much to someone who is unable to give anything in return. I think this One way street is what bothers me the most... giving with very minimal, if any, returns. For me, I am fortunate that my grandpa gives me lots of love. Reading others' stories, I know this is not often this case and I am among the most lucky.
Hang in there everyone. Wishing you Peace, Love and Light!

Having zero joy in life. Lord knows, I try to find joy, but it just seems to be gone. Old-school Italian Catholic guilt rules my life and when the elder passes, I have nothing to look forward to but being all alone and grief. It's bad now, it'll be bad after, and the worst is yet to come as I age and have no one to help me out. Effin' yay!

I have no life. The highlight of my day is going to Dunkin (if possible) for an iced coffee. I think about it all night and can't wait for the morning.

I have only been at this for 6 months but it feels like 6 years. I have not been home in months. I am not the point I have asked my cleaning lady to start throwing all the food away in the pantry.

My daughter is in the middle of nursing school, and I made her promise that she will never feel guilty for not caring for me later in life.

Happy Thursday

A one word answer reflective of my past week: Poop

I took care of my 90+ year old mother in my home for 4 years. She passed away 11 months ago. Almost immediately after she died, I took care of my bed bound husband who had alzhiemer's and Parkinson's disease. He passed away 5 months after my mother. Then, my niece (who was being cared for by her sister) passed away 5 months after my husband. It has been one month since my niece died. My sister-in-law checks on me every day and gets me out of the house at least once a week. It is hard. I finally quit asking God why and instead I now thank Him for knowing I would be strong enough to care for everyone and then be able to get on with my life. If anyone is going through such a hard time, keep going. You will make it through.

I took care of my 90+ year old mother in my home for 4 years. She passed away 11 months ago. Almost immediately after she died, I took care of my bed bound husband who had alzheimers and Parkinson's disease. He passed away 5 months after my mother. Then, my niece (who was being cared for by her sister) passed away 5 months after my husband. It has been one month since my niece died. My sister-in-law checks on me every day and gets me out of the house at least once a week. It is hard. I finally quit asking God why and instead I now thank Him for knowing I would be strong enough to care for everyone and then be able to get on with my life. If anyone is going through such a hard time, keep going. You will make it through.

Not having the freedom I once had. And I'm exhausted all the time.

Having to bear witness to intense suffering, My mother is 98. Her mind is mostly okay but her life is horrible. Simply touching her results in screams of pain. She is almost completely blind, deaf, bed bound, inflamed joints, heart disease, cancer, and neuropathy among many other problems. She can no longer do any of the simple things that once gave her joy. It's a heavy dark cloud of sadness and distress that wears you down.

When family members cone in and have thier own different ideas on how to take care of thier LO, And the fact that thier ideas are not helpful or realistic.

Family members and friends, I've learned not to talk about my mother to others.

There suggestions are just plan horrible, and sometimes down right stupid.

Like I'll say moms grumpy, I get the suggestions, take her out for lunch.

Oh great idea for a 88 yr old with a degenerative spine. 😂

Anxiety ,

That’s when you say …..

“ Good idea ! let me know what day you are coming to help with that “. 🤔😄