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

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

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Agree 100%. After three years of getting my 91 year old father to and from dialysis (shared responsibility with sister and a family friend) I’m just tired of having to schedule my week around it. I never thought he would have lasted this long, especially after our mother died a year and a half ago. He has some level of dementia and he will never voluntarily stop dialysis, and my sister is POA and is not ready to tell him to stop. My resentment at this point is overshadowing the decades of our relationship prior. His mother and father lived well into their 90s, and he has a 95 year old brother. Looking into options to pay others (relatives, etc.) to take over my shifts. I am still working full-time. I think we’ve done our share getting him back and forth for 3 years. I appreciate this forum for allowing us to vent.

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Reply to YaYa79

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I can relate. My father was so attached to my mother so after she passed I figured he'd last 6 months tops. It was nearly 17 years and the last three really weren't living just existing. So much time, energy and money spent to keep someone alive that is really not even aware of what is going around.

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For me it's the unknown timeline. My father has needed help with managing finances and household tasks since 2013 but his dementia made it impossible for him to live alone as of 2023. He has lived with me for 2 years and, honestly, I expected him to decline. He has not. So I'm really not sure if I'm looking at another 2 years? 4? 10? I find that having my life on hold to serve him is making me feel very resentful and depressed. He's 85 and was not very involved when I was growing up. He doesn't have any savings at all. He only needs "custodial" care (supervision and help) so he doesn't qualify for skilled nursing. I have him on the wait list for supplemented assisted living, but that waitlist is years long. It's just depressing not knowing what the commitment is.

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Reply to DianaStuart

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I can empathize. I’ve just emerged from years of having my life on hold. It will end, but sometimes it feels as though it never will.

(11)

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For me, it was seeing someone whom I loved so dearly in so much pain and suffering. My mom was the strongest woman I've ever known, and she worked so hard all her life to help others...I am still coping with seeing someone like her suffer so badly before she left this Earth. Not being able to move as she pleased, reliant on others for everything from bathing to using the toilet to eating. Emotionally, I will never be the same.

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Reply to Tall1Tee

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I am so sorry. I helped my mother as she died, from old age. Nearly blind, in constant pain, fearful, sometimes with poor impulse control, she was no longer the well organized, disciplined, competent, strong woman she once was. It was so hard seeing her constant losses, extending over time, until she finally was blessed with death. I thought I might not live through her dying and I too think I’ll never be the same.

(4)

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Sendhelp

Thanks. Nor is my real citizenship here in this state and city in which I temporarily reside in the USA. One day, I'm going home. I may have someone add to my tomb stone as I saw once in a very old cemetery, "Peace at Last."

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Reply to notrydoyoda

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The lack of TRUE help with financials and actual care from states!!! The states look at you and treat you as imbeciles.

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Reply to Bgreen7777

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Notrydoyoda,
I am reading your posts.
You are correct, this is not your real home.

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Reply to Sendhelp

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The strong likelihood of making some bold moves for the sake of peace, the life as my son says I sound like I don't deserve, My current context basically makes self-care and having a life impossible. I'm not the only saying that either. I will know after this upcoming week if I will set a meeting with a lawyer to learn about my options. My youngest son has wanted me to do this for months. If this takes place, then there are 2 whom I never want to hear about or from including their funerals. From my perspective, I died decades ago and only have existed as someone useful period.

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Reply to notrydoyoda

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Dealing with my sister. After my mother's death and with the sale of the house my relationship with my sister tanked. She has blamed me for every last thing that has gone wrong. It's been pretty ugly.

I'm back in NY visiting my father. We have been avoiding each other, which is fine.
I am tired of walking on eggs.

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Reply to Hothouseflower

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I avoid my sister as well. I keep her informed about our Dad's ongoing declining health. She has not helped at all with all the work involved in caring for my father for 5 years - ever since my mother died. She did she not help with the tasks - clearing out a house filled with 80 years of accumulated furniture, personal effects, clothing, etc., financial matters, selling his home, finding and moving him into an assisted living facility and taking care of all his medical needs. She was not there emotionally for me either - to comfort or support as none of this was easy. I'm just done with her. She and her husband have just continued to live a normal life - traveling, seeing friends, even doing consultant work.

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Dealing with personality disorders such as my mom's, wife's and her mom's. At least I'm only visiting this planet.

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Reply to notrydoyoda

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The years-long emotional rollercoaster.

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Reply to mads123

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Pipsqueak doctors that don’t have a freakin’ clue.

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Reply to Peasuep

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Resistance to care or help and interference from family that doesn't provide care

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Reply to caregiver008

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Resistance to care.

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Reply to Sunnygirl1

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That siblings expect too much while they do nothing but rarely visit my Father. I am working part time at my Father's company working on taxes as he owns multiple properties bills bank deposits keeping registers balanced dealing with senior living center and health insurance companies. I have health issues also in a lot of pain and I am in my 70 s.I have done for them their children and grandchildren. They have never asked can they help me with anything? I have been alone for the past 7 years. They do not care about the multiple health issues I have. I go see my Father almost everyday. They are terrible. The only one that helps does what she can but is younger and still works a lot. Others do whatever they please. I have to cancel going places and even appointments. One sister has been home 7:, days a week and does nothing. I am worn out

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Reply to Linvo1

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If you are in your 70s your father must surely be in his 90s. If you are “working part time at my Father's company”, who is running the company? Surely not your father? If “he owns multiple properties bills bank deposits etc”, someone should be hired to do the management work that is falling to you. And one would hope that you have secured your own financial interest in the company that you still call ‘your father’s’. It doesn’t sound ‘right’ to split it equally with these family members who do so little.

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WHat bothers me most about some hourly paid caregivers is that when I get a new client who has had a caregiver as that caregiver did nothing but sit on their butt and get paid for it and this has happened before I go in and the house is so dirty and the dust has accumulate so .especially in homes where my clients have respiratory issues with ALS or COPD it's so irritating the first thing I do is go in and move everything and super vacume and dust . It's like the agency's don't check to make sure paid caregivers are really doing their job . And it is the client who we are suppose to help that is suffering .what can we do about this problem of lazy caregivers

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Reply to Judijettson

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Good luck. It got to the point I just hoped the caregivers showed up and didn't abuse my loved ones. Many did little to no housework. One even tried to start a caregiver business while on the clock, but at least she kept my loved ones from wandering off in the middle of the night.

I hired privately when I could. The extra $7-$10/hour for an agency wasn't worth it. They still didn't guarantee to cover all scheduled shifts and their caregivers weren't better trained than any others. Some even complained to new caregivers who actually did some work.

(1)

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I’m still processing that I am no longer the primary caregiver for my 94-year old mother as she moved out of her apartment to a retirement home in another city close to my sister.

One thing that I struggle with is the term ‘family caregiver’. It implies that being a family member is synonymous with being a caregiver. What I disliked was what a slippery slope it all turned out to be: my proximity; Mom’s immediate needs; family expectations.

I never want to be in a situation like that ever again. 10 years of my retirement was a long time. It turned out to be a marathon.

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Reply to Danielle123

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My father is in memory care. They are wonderful. I visit once a week to have eyes on him. My brother visits 2-3 times a week. I am the person managing his finances and making decisions in general and my brother is #2 for those responsibilities. The other two siblings are not involved. The process to get him in this ideal setting was long and stressful. It's down to where I handle his finances and decisions about him, and am first on the phone call list if the staff needs to call. The staff has been told to deflect requests from him to call anyone himself. He is 99 and looks 79, except his mind is gone! He was very frugal and I am spending his money for his needs now. I doubt he will make it to exhausting his money. Thank goodness my stepmother encouraged him to make a will and a POA, as the POA has been beyond invaluable. So, he's not in my home with me as a hands on caretaker, but I do spend some time on him still. From another question in this newsletter, I am going to start giving the MC periodic updates on when his money may run out. I will be applying for Medicaid in that event. The hardest thing so far was an episode, after dementia set in, when he was lashing out about all his kids. I have not borrowed any money from him as others have, but he made a comment that had to "beat me off". And, here I thought he enjoyed helping me with projects, using his skills, and spending time with me. Evidently I was bothering him, but now I know how he really felt about me and the rest of my siblings. I was hurt and pissed off and have not got over that. That's been the hardest thing.

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Reply to JR2555

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Oh, how hurtful! 😞 I’m sorry he said that. But I have to push back— do you really think that was him talking, OR the serious brain disease he has that is destroying his cognitive function? Chances are, dads doing projects and sharing skills with their kids are doing it because they enjoy doing it and enjoy being with their kids. As you say, he said this AFTER dementia set in.

(1)

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I can't go to church without it causing guilt trip problems at home, and my wife doesn't care for gong with me. I'm in a catch-22. I pray that this season of my life ends before Jesus returns so I can get that back on track with the life I want/need to lead. Right now, I have to rely on the grace that was paid for at the cross. I think abandoning my wife would be a huge sin. I want to keep her at home as long as possible. But I also need to obey God.

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Reply to jwellsy

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Jwellsy, what else bothers you besides not going to church? What are you doing wrong that you need to get “back on track with the life I want/need to lead”? You can change any habits that you think are bad, you can pray silently as much as you wish, and you can take part in TV church services and be part of their extended congregation. I don’t think that Jesus in the Bible says that we must go to church (or synagogue). You need your own and God’s forgiveness for any things that are unavoidable in your situation. Know that you are doing your best, and be kind to yourself as well as to your wife.
Love, Margaret

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Husband just had stroke. Knowing they don’t get it doesn’t make it easier give yourself a break. I will be doing five things at once and he will ask me for something right in his lap.

He has always been that way if what I am doing is what might be considered domestic or “women’s work.” We also worked together and he respected my “intellectual/professional” tasks in the office. It’s a weird dichotomy. I used to snap or yell at him before he got sick. Now I can’t he looks so vulnerable it breaks my heart but I still feel that surge of WTF?

Can’t you see I’m doing the five last things you asked me to do? Then I feel like a complete bi**h yelling at a child!

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Reply to MedicineBitch55

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I’m sorry. I feel like a b**ch too. I don’t know how to be patient anymore. I’m so angry and so tired.

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I feel like life is on hold while I wait for the next shoe to drop with my 94-year-old father-in-law, whether it's the next ER adventure or another cleared check written to a grifting aunt or a new fraudulent charge on his credit card or predictable outrage when I refuse to buy OTC medications that might interact with his long list of medications. Even so, I know we are lucky because he resides in a good assisted living facility with resources to cover the costs. My heart goes out to those of you who are full-time caregivers sacrificing your own retirements.

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Reply to SadToWatch

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You need to educate yourself about dementia.
Yes, when a brain starts to die ... when brain cells die ... this is what happens.
Your confession is one of a lack of understanding what dementia is.

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Reply to TouchMatters

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This is a harsh response to an honest answer to a simple question: "What's the one thing that bothers you the most about caregiving?"

Regardless of the reason for AD egocentricity, it's understandable for even the most informed caregiver to be bothered by it. Let's go easy on each other in this forum meant to support, not criticize.

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This is old I know, but the problem is relatively new to me as being a care giver for just 4 yrs.. She is my mother, she worked hard low waged jobs to keep a roof over our head & food on the table. Being widowed when I was just 3, my lil sis 1 day shy of 1. Dad died on the 23rd of Dec, Barb was born on Christmas Eve. So this time is especially hard.
She is the reason I never had children, for I seen she gave up her whole life for us.
My 1st MIL called me selfish, yes I guess I was!?? I worked hard, I played hard & the responsibility of a child scared the death out of me.
But now I have to be the mom, she has no one else, I have no experience but I know compassion, I know or think I do what is right. That is me as the only surviving child of 5 & her the only child of 7. Who else but me!? I really dislike the fact that it has come to this. If I had known I would of had kids but I didn't & now I will have no one to care for me & it is her fault, but the love I have Makes one think.should of, could of ,would off!
So my answer would reality, that she made me face, that never crossed my mind.
I' be become a mama in my 60's & if she would of trusted me always as I have never done her wrong, she wouldn't be in the place she is nor would I

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Reply to Peggysdaughter1

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That I don't know when I will be able to go back to the life I had. My dad is in hospice but he declines and then recovers over and over. I get frustrated by it and feel like I will be in this situation for the rest of my life. I know it's not true but it is the one thing about my situation as a caregiver that bothers me the most.

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Reply to Calcifer94

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You won’t be, but I understand that feeling very well, having walked in your shoes. If he is in hospice, this will end. You truly are not perma-stuck, although it’s hard to stay the course,

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I wish I had never done any caregiving whatsoever for my mom. There was no end to what she would have me do while she would not ask my brother the golden child to do anything.

For 3 years I put up with it while she had dementia and after an argument with my brother telling me how he wanted me to do everything because he had POA & he had “control” I finally told him I was done & he could do it all himself.

Well after that he took my mom to an attorney & had her amend her trust removing me as 50/50 & leaving everything to him 100%.

Do not do any caregiving without having medical & financial POA.

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Reply to Jada824

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I’m glad that you walked away from the caregiving as it was a bad situation for you, but I’m sorry about your brother’s response. Wishing you peace.

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I’m so glad found this page. Thank you all! I’m taking care of my 93 year old mother, who I’ve had a very difficult relationship with, so many unresolved issues. I know it’s too late, but I feel like if she can still talk, why not just say “I’m sorry”, two words? For abandoning me to foster care from 15-18, not speaking to me until I was 20, out on the streets alone, so many things I’ve tried to resolve for decades, not sure how I can stop trying. It’s hard because my body broke down decades ago from so much trauma, but now I’m the sole caregiver to her, giving her everything I’d wanted as a child. After a housefire, she told me in the trauma ward that she was “leaving me the condo”,( but for now I should go to a homeless shelter because her new boyfriend didn’t want me around), which would have been my only source of history and identity, in a way. And after so much instability after refusing to help me get an education, though everyone else has PHDs in the family. Then she decided, I found out last week, on Christmas Day, that she’s moving herself somewhere else, I heard it from her upstairs neighbor, “I’ll miss my favorite neighbor!”, I asked “who’s moving?” We speak everyday, I support her every eyelash, but the fact that this affects me is laughable to her. I want to scream at her “You’ve betrayed me my whole life, and now this?”! But then I’d feel so guilty and she’d make sure I did. Of course I’m so happy she made a descion, I live 5 minutes away, but not with her, she wouldn’t want me, but she went ahead with this without involving the one person who’s life it will utterly change and affect. My friends tell me their parents told them decades ago what they were planning for end of life care, and I’ve tried until I’m blue in the face to know what she’s decided about not just hers, but MY life. She always got pretty violent so I shut down and kept loving her anyway. I just feel unseen, unheard, hurt, I hate myself for loving her and needing her, for my body breaking down, losing everything I worked for for 62 years, for entering this Faustian bargain with my very survival, instead of not having a family,now no stable housing in my life, ever, and I’ll face the grief of losing her with nothing to hang onto or help me. I just don’t know how to do this. I know I’m venting, sorry to, but I am glad to find this page. I’m sure every caregiver( who’s related) has dynamics from the past that make things harder, heck, it’s hard enough to watch a loved one decline and fear the grief, while in” pre-grief “and grieving what will never be resolved can be part of all the other losses. Thank you all for your honesty, it’s helped me tremendously.

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Reply to Radiator

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Sorry, I just saw how much I vented, I wasn’t just answering the OPs question and I do apologize. It’s my first post here, and I let it all hangout, I hope you don’t mind if I leave it that way, ill be more brief in the future!

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I don’t remember if I answered this before but here it goes. I feel I always had a caregiver heart. I was my mom’s caregiver. This has been over 20 years ago. My mom was diagnosed with cancer so I Thank God it wasn’t years of caring for her. I in my mind said to myself I’m never going to see her again after this. So I stopped working and at the time I had a 10 year old and I was a single mom. Yes! It was hard. I did have some help from outside programs. I didn’t have help from any siblings. We were 8 of us. Two of my sisters have mental issues. My dad was an alcoholic. Two brothers have passed before my moms passing. When my mom passed my baby sister shows up afterwards and what I hated about her coming around was her bossiness. Where was she when I needed family. She never called. Years passed and I have been a paid provider for my two sisters on and off but it hasn’t been easy. Now I feel I’m So Done with my family. I never regretted taking care of my Mom. RIP.

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Reply to GrandmaMaria

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My retired sisters living their best lives while I am looking into govt assistance bc my unemployment and caring for our mom who needs monitoring due to her memory loss and anxiousness.

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Reply to tdhawk888

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I'm sorry you are going through this. Sadly, many of us have siblings who just don't help with caring for elderly parents. I've vented many times on this board about the resentment and hurt I feel while being the one who does all the caregiving for my father when my sister enjoys numerous trips to Europe and basically a carefree retirement. Yet she will dictate from afar what she wants done for our Dad but never helps. Wishing you some peace as deal with this very sad, stressful and lonely situation.

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Well it is more a fear - I guess - that I am going to be sued by my siblings. I am trustee. I have not done anything illegal, talk to my lawyer all the time and keep good receords but that is not going to stop them. It is mostly my sister in law that has been the one all these years to cause me so much grieve. She thinks the inheritance is hers. She is not going to get any of it because she is not a beneficiary but some of the things she has done or has tried to do is downright illegal. When we get to that stage where we have lost momma I am just waiting for her to try something unless she does it right before we lose her. I don't trust my sister in law nor do I trust my brother and for that matter not any of them because of their past behaviors. If this happens or lets just say sister in law and brother get momma to sign a new will - I know that I would have to hire an attorney and go through all of that crap. I am tired! Been doing this for almost 14 years. This has caused me health and relationship problems. Not with my husband but it has been hard on him too but between me and momma, brother, sister in law, neice and sister. I love my momma but I am ready for this part to be over so I can grieve and live the rest of my life. I never had a chance to grieve dad when we lost him because I immediatly had the role of taking care of momma. Momma is 90.

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Reply to akababy7

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Go ahead and get your mom declared incompetent if she is. That way anything they do after that would be illegal.

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My full time caregiving job has been going on for 1 1/2 years. People on the outside have absolutely no clue how hard this is 24/7. Home dialysis is every night. Mobility is so limited so it's constant transfers. But I'm grateful that I have the strength and the equipment to do it. She will only worsen with time. I am grateful for all the good years we had. It pains me to see her like this. I will survive.

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Reply to Backwoods

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Old post. I sent a PM to the person who resurrected this

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Reply to MACinCT

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I actually like seeing it from time to time and it gives folks who are new a chance to vent a little.

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

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